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Table 1 Summary table of findings by theme and whether supported in diary or interviews

From: An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes

Themes Findings Supported in diary Supported in interviews
Educating family and staff about dementia progression and EOL care Families and staff needing and wanting more information about diagnosis, symptoms and progression of dementia
NH staff lacking confidence to initiate and have EOL conversations
Staff attributing symptoms and behaviours to dementia without trying to identify an underlying cause  
Training and case scenarios increasing staff confidence and being able to see things from the families’ perspective
Discussions with family appear to increase their capacity to make informed decisions, eg around cardiopulmonary resuscitation
Family sessions generated much discussion and appeared a good avenue for education
Usefulness of written information to support discussions  
Importance of ICL as a role model to staff in having conversations with family and communicating with residents with advanced dementia  
Appreciating the value of in-depth EOL discussions (over documentation) Importance of ongoing dialogue with family to build relationships, provide reassurance and allow time for family to process information
NH staff prioritising documentation such as DNAR or not for hospitalisation over ongoing dialogue – task oriented approach and not appreciating the complexity and need for individualised approach to these discussions  
Importance of addressing family member’s current issues and concerns before discussing future plans  
Need to acknowledge family members’ grief and guilt  
Difficulties communicating in English prohibit in-depth and sensitive conversations about EOL
Importance of information provided in a sensitive way
Providing time and space for sensitive discussions Not suitable having sensitive conversations with family in communal areas such as lounge or dining room  
Spending sufficient time with family to address their questions and explore their concerns – including follow-up sessions/ongoing dialogue. The ICL was able to provide this time.
NH staff and GP having multiple demands preventing spending focused and uninterrupted time with family
Having an independent healthcare professional or team with responsibility for EOL discussions ICL role was independent from GP and NH and considered to be primarily in interests of resident and family
Independent person provides alternative and fresh view of the residents’ needs and care