TY  - JOUR
AU  - Scheibl, Fiona
AU  - Boots, Lizzy
AU  - Eley, Ruth
AU  - Fox, Christopher
AU  - Gracey, Fergus
AU  - Harrison Dening, Karen
AU  - Oyebode, Jan
AU  - Penhale, Bridget
AU  - Poland, Fiona
AU  - Ridel, Gemma
AU  - West, Juniper
AU  - Cross, Jane L
PY  - 2024
DA  - 2024/5/22
TI  - Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design
JO  - JMIR Form Res
SP  - e52389
VL  - 8
KW  - adaptation
KW  - caregivers
KW  - dementia
KW  - intervention
KW  - web-based resources
KW  - United Kingdom
KW  - co-design
KW  - web-based intervention
KW  - support
KW  - carer
KW  - caregiver
KW  - family carer
KW  - community-based
KW  - services
KW  - web-based support
KW  - staff
KW  - self-help, web-based
AB  - Background: Around 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers 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 prioritized the need to expand the provision of support for caregivers and families of people with dementia by 2025. Web-based interventions have the potential for development as they require modest investment and can be accessed by family caregivers 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 (PiB), a web-based coaching intervention developed in the Netherlands, for family caregivers in the United Kingdom. Objective: This study aims to work with unpaid family caregivers and staff in adapting the Dutch web-based support tool PiB to improve its acceptability and usability for use in the United Kingdom. Methods: Accelerated Experience-Based Co-Design (AEBCD) was used with caregivers, staff, and core stakeholders. Interviews, workshops, and stakeholder consultations were conducted. Data were analyzed iteratively. Recommendations for the redesign of PiB for use across the United Kingdom were adjudicated by the study Adaptation Working Party. Results: Sixteen caregivers and 17 staff took part in interviews. Thirteen caregivers and 17 staff took part in workshops. Most (n=26) participants were White, female, and retired. All except 4 caregivers (2 male and 2 female) found the PiB’s offer of web-based self-help learning acceptable. Caregivers identified complexity and lack of inclusivity in some wording and video resources as problematic. The staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and caregivers coproduced new inclusive wording and recommended creating new videos to adapt PiB for the UK context. Conclusions: AEBCD methods facilitated the engagement of caregivers 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 to new wording where this could not be established in consultation with caregivers and staff. Trial Registration: ISRCTN Registry ISRCTN12540555; https://doi.org/10.1186/ISRCTN12540555 
SN  - 2561-326X
UR  - https://formative.jmir.org/2024/1/e52389
UR  - https://doi.org/10.2196/52389
UR  - http://www.ncbi.nlm.nih.gov/pubmed/38776139
DO  - 10.2196/52389
ID  - info:doi/10.2196/52389
ER  -