Effectiveness of a Blended Care Self-Management Program for Caregivers of People With Early-Stage Dementia (Partner in Balance): Randomized Controlled Trial (Preprint)

Boots, Lizzy; Vugt, Marjolein E. de; Kempen, Gertrudis I. J. M.; Verhey, Frans R.J.

doi:10.2196/preprints.10017

Cited by 2 publications

References 36 publications

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Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design

Scheibl,

Boots,

Eley

et al. 2024

JMIR Form Res

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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

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Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design

Scheibl,

Boots,

Eley

et al. 2024

JMIR Form Res

Self Cite

View full text Add to dashboard Cite

show abstract

Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design (Preprint)

Scheibl,

Boots,

Eley

et al. 2023

Preprint

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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. CLINICALTRIAL ISRCTN12540555 https://doi.org/10.1186/ISRCTN12540555

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Effectiveness of a Blended Care Self-Management Program for Caregivers of People With Early-Stage Dementia (Partner in Balance): Randomized Controlled Trial (Preprint)

Cited by 2 publications

References 36 publications

Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design

Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design

Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design (Preprint)

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