JMIR Publications

ABSTRACT

Background:

Background:

Around 700,000 family carers provide unpaid care for 900,000 people living with dementia in the United Kingdom (UK). Few family carers receive support for their own psychological needs and funding for community-respite services has declined. These trends are seen across Europe as demographic and budgetary pressures have intensified due to public spending cuts arising from the 2008 financial crisis and the COVID-19 pandemic. The World Health Organization has prioritised the need to expand provision of support for carers and families of people with dementia by 2025. Online interventions have potential for development as they require modest investment and can be accessed by family carers at home. Further cost benefits can be realized by adapting existing interventions with demonstrated effectiveness for new contexts. This paper reports initial findings from the CareCoach study which is adapting ‘Partner in Balance’, an online coaching intervention developed in the Netherlands, for family carers in the UK.

Objective:

To work with unpaid family carers and staff in adapting the Dutch online support tool ‘Partner in Balance’ (PiB) to improve its acceptability and usability for use in the UK.

Methods:

Accelerated Experience-Based Co-Design was used with carers, staff and core stakeholders. Interviews, workshops and stakeholder consultations were conducted. Data were analysed iteratively. Recommendations for re-design of PiB for use across the UK were adjudicated by the study Adaptation Working Party.

Results:

Sixteen carers and 17 staff took part in interviews. Thirteen carers and 17 staff took part in workshops. Most (26) participants were white, female and retired. All except 4 carers (2 men and 2 women) found the PiB’s offer of online self-help learning acceptable. Carers identified complexity and lack of inclusivity in some wording and video resources as problematic. Staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and carers co-produced new inclusive wording and recommended creating new videos to adapt PiB for the UK context.

Conclusions:

Accelerated Experience-Based Co-Design (AEBCD) methods facilitated the engagement of carers and staff and advanced the adaptation of the PiB complex intervention. An important addition to the AEBCD method in this process was the work of an Adaptation Working Party which adjudicated and agreed new wording where this could not be established in consultation with carers and staff. Clinical Trial: ISRCTN12540555 https://doi.org/10.1186/ISRCTN12540555