Adapting the World Health Organisation’s ‘iSupport’ for Young Dementia Carers

Abstract

Objectives:

The number of children and adolescents who have caring responsibilities for a family member with dementia is rising. They need help to understand the illness, what changes are expected and how it can affect their family member. This presentation reports on the co-design of an adapted version of iSupport for young carers.

Methods:

A theoretically driven co-design approach was followed, drawing on the lived experiences of young dementia carers. Young dementia carers (n=6, age 12-16) and professionals who work with young carers (n=5) took part in three workshops and provided individual contributions. Feedback was analysed and adaptations organized according to the dimensions of the Ecological Validity Model which addressed the structure and design, content, context and language. By focussing on these dimensions, we intended to increase the relevance, acceptability and comprehensibility of iSupport to this new target group while keeping the completeness of the theoretical premises underpinning it.

Results:

Informed by feedback from participants a number of adaptations were carried out. Case scenarios included in the original iSupport were edited and other new ones created to place the focus on a young character with caring responsibilities within a family unit. These characters were young people with a parent or grandparent living with dementia. Also, illustrations portraying human characters representing a range of ages and ethnicities were added throughout. These characters emphasised the actions described within the carer case scenarios. Adaptations to the ‘design’ and ‘language’ were also carried out. For example, the quantity and complexity of the text was reduced as much as possible without compromising its readability and meaning. Clarity and appeal were increased by changing font size, style and including brighter colour schemes. Adaptations resulted in the creation of iSupport for Young Carers.

Conclusions:

iSupport for Young Carers is the first e-health intervention of its kind and aims to support the mental health, knowledge, and skills of young dementia carers. This new adaptation provides opportunities for other countries and demographic groups to translate and adapt iSupport for Young Carers to their specific cultural context.