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Scheibl, Fiona, Boots, Lizzy, Eley, Ruth, Fox, Christopher, Gracey, Fergus 
ORCID: https://orcid.org/0000-0002-1416-7894, Dening, Karen Harrison, Oyebode, Jan, Penhale, Bridget ORCID: https://orcid.org/0000-0002-8487-0606, Poland, Fiona ORCID: https://orcid.org/0000-0003-0003-6911, Ridel, Gemma, West, Juniper and Cross, Jane L. ORCID: https://orcid.org/0000-0002-7003-1916
(2024)
Adapting a Dutch web-based intervention to support family caregivers of people with dementia in the UK context: Accelerated experience-based co-design.
JMIR Formative Research, 8.
ISSN 2561-326X
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Abstract
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
| Item Type: | Article |
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| Additional Information: | Acknowledgements: The authors acknowledge the contributions of the family caregivers and staff who generously gave their time and input into developing the adaptation of the intervention during interviews and workshops. The authors also thank Dr Mohammed A Rauf MBE for his support with community consultations with dementia support groups in Bradford and the community members who took part in the consultations. The authors also thank the CareCoach patient and public involvement coapplicant Geoff Fenwick and the members of the service user advisory group for their input in the PiB adaptation process. The authors acknowledge support from the National Institute for Health and Care Research (NIHR) Health Tech Research Centre in sustainable innovation for CareCoach. This research was supported by the NIHR Applied Research Collaborations of the East of England and South West Peninsula. The authors would like to acknowledge the contributions of our charity partners Dementia UK, Alzheimer Society, and Together In Dementia Everyday, and the Norwich Clinical Trials Unit for their support. |
| Uncontrolled Keywords: | adaptation,caregiver,caregivers,carer,co-design,community-based,dementia,family carer,intervention,self-help,services,staff,support,united kingdom,web-based,web-based intervention,web-based resources,web-based support,medicine (miscellaneous),health informatics ,/dk/atira/pure/subjectarea/asjc/2700/2701 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > School of Health Sciences Faculty of Medicine and Health Sciences > Norwich Medical School |
| UEA Research Groups: | Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life Faculty of Medicine and Health Sciences > Research Centres > Norwich Institute for Healthy Aging Faculty of Medicine and Health Sciences > Research Centres > Institute for Volunteering Research |
| Related URLs: | |
| Depositing User: | LivePure Connector |
| Date Deposited: | 24 Sep 2024 12:55 |
| Last Modified: | 24 Sep 2024 12:55 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/96793 |
| DOI: | 10.2196/52389 |
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