The impact of the mySupport advance care planning intervention on family caregivers’ perceptions of decision-making and care for nursing home residents with dementia: pretest–posttest study in six countries

Abstract

AbstractBackgroundthe mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative’s future care.Objectivesto investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers’ uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents’ hospitalisations and documented advance decisions.Designa pretest–posttest design.Settingin Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated.Participantsin total, 88 family caregivers completed baseline, intervention and follow-up assessments.Methodsfamily caregivers’ scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents’ hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests.Resultsfamily caregivers reported less decision-making uncertainty (−9.6, 95% confidence interval: −13.3, −6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged.Conclusionsthe mySupport intervention may be impactful in countries beyond the original setting.