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.