Table 3.

Description of included primary studies reporting empirical research

Author, year of publication and country	Study goal	Study design: qualitative, quantitative or mixed-method	Participants and setting	Themes and findings: moral considerations as barriers to and facilitators of ACP. perspective	MMAT
Dempsey1 2013, UK	Highlight the benefits and challenges of ACP for individuals with dementia	Qualitative descriptive design	General practice. Physicians, patients and family or loved ones	Ethical and legal dilemmas for implementation ACP Perspective: professionals, patients, loved ones	40
Saini et al2 2016, UK	Examine practices relating to EOL discussions with family members of people with advanced dementia residing in NH and to explore strategies for improving practice	Ethnographic study using framework approach: thematic analysis of fieldwork notes and observations, and data from in-depth interviews	NH. Residents, n=9; staff interviews, n=19; family members interviews, n=4	EOL discussions as an ongoing rather than a one-off task-driven conversation Perspective: family members, GPs, nursing home staff end external physicians	60
De Vleminck et al3 2014, Belgium	Identify barriers to initiate ACP and gain insight into any difference in barriers between trajectories of patients with cancer, heart failure and dementia	Qualitative design, 5 focus groups, discussion analysed using the method of constant comparative analysis	Primary care. GP, n=36	Barriers to ACP relating to the GP, patient and family and the healthcare system. Perspective: GP	80
Booij et al6 2013, The Netherlands	Explore the role of the physician regarding talking about the EOL wishes.	Qualitative study, semi structured interviews	Primary care and elderly care physicians, n=15	Reasons for the physician to discuss EOL wishes from a legal, professional and moral point of view. Perspective: physicians	100
Beck et al8 2017, UK	Examine NH managers’ knowledge, attitudes, beliefs and current practice regarding ACP	Cross-sectional postal survey, quantitative study	NH managers, n=116	Negative connotations regarding ACP among nurses. Role NH manager to actively engage and ensure facilitation of the process. Perspective: NH managers	20
Stewart et al11 2011, UK	Explore views on advance care planning in nursing homes	Individual semistructured interviews	NH. Staff, n=33; care assistants, n=29; nurses, n=18; family, n=8; friends, n=15	Benefits of, and barriers to ACP. Perspective: staff, care assistants, nurses, families and friends of residents	60
Brazil et al22 2015, Northern Ireland	GP’s perception of ACP for patients living with dementia	Cross-sectional survey, using purposive, cluster sampling of GPs with registered dementia patients. Quantitative design	General practice. GP with registered dementia patients, n=133	Communication, ACP and decision making: optimal timing, initiated by the physician, importance of relationship, acceptance prognoses and limitations of life-sustaining therapy as barriers. Perspective: GP	80
Cheong et al33 2015, UK	Explore the perspectives of patients with early cognitive impairment regarding ACP	Mixed-methods study	Primary care. Patients diagnosed with early cognitive impairment, n=93	Patients decline ACP because of personal values, coping behaviours and sociocultural norms. Perspective: patients	100
Livingston et al34 2013 UK	Improve EOL care for people with dementia in a nursing home by increasing documentation and implementation of advanced wishes	Mixed-methods study. Non-randomised study: comparing advance documentation and implementation and themes from after-death interviews, pre and postintervention	NH for people with dementia, providing care recognising Jewish traditions, beliefs and cultures. Patient records, n=98; interviews with relatives, n=20; staff, n=58	Increase in family satisfaction with reduction in hospital deaths. Staff members more confident about EOL planning and implementation wishes. Perspective: NH residents, family members and staff	60
Livingston et al35 2012 UK	Examine barriers and facilitators to care home staff delivering improved EOL care for people with dementia	Individual qualitative interviews	NH where staff and residents’ ethnicity differed. Staff members, n=58	Barriers such as concern to upset, being blamed, inability to communicate Perspective: NH staf	60
Robinson et al36 2013, UK	Explore professionals’ experiences on implementation of advance care planning in dementia and palliative care	Qualitative study, focus groups and individual interviews	Palliative care, primary care and dementia care services. Professionals: physicians, nurses, volunteers and legal professionals, n=95	Uncertainty about the value and usefulness of ACP, the definition, components and legal status of ACP and the practicalities of implementation. Perspective: professionals	80
Dickinson et al 37 2013, UK	To investigate patients’ and family caregivers’ views on planning their future generally and ACP specifically	Qualitative study using semi-structured interviews	Local older people services People with mild to moderate dementia, n=17; and family caregivers, n=29	Participants’ barriers to undertake ACP: knowledge and awareness, right time, informal plans, future care and lack of support. Perspective: patients and family caregivers	60
Palan Lopez et al38 2017, VS	Examine how decisions to transfer NH residents with advanced dementia are made	Qualitative descriptive method and semistructured, open-ended interviews	NH. Healthcare providers, n=20; nurses, n=14; physicians, n=6	ACP in the process of decision making in case of an acute event to ensure that goals of care are maintained. Perspective: nurses and physicians	60

ACP, advance care planning; EOL, end of life; GP, general practitioner; MMAT, Mixed-Methods Appraisal Tool; NH, nursing home.