Abstract
ObjectiveWe aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative’s end-of-life care. MethodsWe used nominal group methods to create country-specific QPLs. Family caregivers read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also selected questions from a shortlist. We analyzed and compared the QPLs using content analysis. ResultsFour to 20 family caregivers per country were involved. QPLs ranged from 15 to 24 questions. A quarter (24%) of the questions appeared in more than one country’s QPL. One question was included in all QPLs: “Can you tell me more about palliative care in dementia?”. ConclusionFamily caregivers have many questions about dementia palliative care, but the local context may influence which questions specifically. Local end-user input is thus important to customize QPLs. Practice implicationsPrompts for family caregivers should attend to the unique information preferences among different countries. Further research is needed to evaluate the QPLs’ use.
Highlights
Nursing home residents are typically older adults with high levels of chronic illness and impairment
The Necessary Discussions study is very timely given the challenging experiences of nursing homes, their staff, residents and their family members during the COVID-19 pandemic
The training and information resources will be ‘COVID-centric’, but they will have a longstanding relevance for future advance care planning (ACP) practice in UK care homes
Summary
Nursing home residents are typically older adults with high levels of chronic illness and impairment. This study aims to develop and evaluate advance care planning (ACP) COVID-centric online training and information resources for nursing home staff and family members of residents, to improve care at the end of life during a COVID-19 outbreak. One way of ensuring that care reflects the wishes and preferences of residents, is to develop an advance care plan It is regarded as good practice for advance care plans to be in place at the earliest possible opportunity upon admission to a nursing home, the COVID-19 pandemic and the sudden manner of illness and rapid deterioration of nursing home residents, and in some cases death, has amplified the need for documented advance care plans [2, 3]. ACP is viewed as an on-going conversation which should involve the provision of information [5] to patients’ / residents’ and family members’ “... as a means of navigating the uncertainties at the end of life by identifying and supporting patients’ needs and preferences for care.” [6]
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