Accepted for/Published in: JMIR Formative Research
Date Submitted: Sep 1, 2023
Date Accepted: Feb 13, 2024
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Using Accelerated Experience Based Co-Design to adapt a Dutch on-line intervention to support family carers of people with dementia in the UK context
ABSTRACT
Background:
Around 700,000 family carers support 900,000 people living with dementia in the UK. Few family carers receive support for their psychological needs and publicly funded community-based services have 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. Investment in adapting existing interventions offers further cost benefits but ensuring a good fit between the cultural identity of the target community and the content of the online intervention is important to effectiveness. This paper reports findings from the CareCoach study which is adapting an online coached intervention ‘Partner in Balance’ developed in the Netherlands for use 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 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 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 were 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 Adaptation Working Party who adjudicated and achieved final agreement on new wording where this could not be established in consultation with carers and staff. Clinical Trial: ISRCTN12540555 https://doi.org/10.1186/ISRCTN12540555
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