Table 2 Studies of layperson perspectives on layperson-to-peer communication related to serious illness or advance care planning

1 Berry and Planalp, USA, 2009 [30]

To explore ethical issues hospice volunteers confront in their work

Thematic analysis of interviews

39 hospice volunteers in urban and rural areas in Southwestern US. Mean age 64, 76% female, 100% White

Four themes of ethical issues: 1) dilemmas about gifts, 2) patient care and family concerns, 3) issues related to volunteer roles and boundaries, and 4) suicide/hastening death.

2 Brighton et al., UK, 2017 [20]

To explore hospital volunteers’ end-of-life care training needs and learning preferences, and the acceptability of training evaluation methods

Thematic analysis of focus groups

25 hospital volunteers with at least 3 months experience. Mean age 50 (range 19–80 years), 76% female, highly ethnically diverse sample

Four themes emerged: 1) preparation for volunteering role; 2) end-of-life care training needs, including a) communication skills, b) understanding grief and bereavement, c) understanding spiritual diversity, d) understanding symptoms at end-of-life, and e) volunteers’ self-care; 3) learning preferences, including a) teaching methods, b) teachers, c) optional vs mandatory training, d) consolidating learning; and 4) evaluation preferences.

3 Clarke et al., UK, 2009 [36]

To evaluate whether researchers successfully worked with peer educators to develop and pilot an education program for advance care planning

Participatory action research; analysis of questionnaires, field notes, interviews

5 “older adult” peer educators from community organizations, who were research advisors and volunteer peer educators

Peer educator findings from the program development process included: 1) enjoying project meetings, 2) involvement in reviewing material, 3) enhanced awareness of advance care planning, 4) training encouraging action, and 5) training enabling action.

4 Foster, USA, 2002 [28]

To describe volunteer-patient relationships and communication at the end-of-life

Narrative ethnography using interviews, observations, small groups

9 hospice volunteers and researcher over 12-months in 1 hospice

Three themes related to volunteer-patient relationships emerged: 1) focus on the life of the patient – “The patient is alive”, 2) volunteer prioritizes the patient – “It’s not about me”, and 3) importance of presence – “Being there”.

5 Jones et al., UK, 2015 [29]

To evaluate volunteers’ experiences of advance care planning in a hospice

Mixed-method descriptive case studies, data from open-ended questions

10 advance care planning -trained hospice volunteers completed questionnaires, providing 23 statements for analysis

The first theme was benefits of being an advance care planning volunteer, including a) positive interactions, b) gratitude shown by peers, and c) personal impact. The second theme was challenges of being an advance care planning volunteer, including: a) no engagement by peer, b) negative attitude of caregiver, c) being asked for inappropriate advice, and d) denial by peers.

6 Planalp and Trost, USA, 2008 [22]

To understand difficult communication issues or dilemmas experienced by hospice volunteers, patients, and their families

Qualitative analysis of data from 3 open-ended questions

351 hospice volunteers from urban and rural areas in Southwestern US. Mean age 55 (range 15–88 years), 75% female.

Three themes of communication issues were identified: 1) denial between the dying person and their caregiver/family; 2) dealing with many negative feelings experienced by the patient and their caregiver/family; 3) family issues, including a) within-family conflicts, b) conflicts about patient care/treatment, c) financial/estate issues, d) unresolved relationship issues. Sources of communication difficulties were physical and/or mental impairments that made it difficult to talk with the dying person.

7 Planalp et al., USA, 2011 [27]

To describe conversations volunteers had with patients that they considered meaningful

Qualitative analysis of data from open-ended questions and in-depth interviews

350 hospice volunteers from 32 hospices in Southwestern US completed questionnaires, 31 volunteers interviewed

Prominent themes about meaningful conversations were: 1) meaning of life, experiences and life stories, 2) talk about death and spirituality, 3) families and relationships, 4) shared interests with volunteers, 5) unfinished business, and 6) loss of capacities. Volunteers appreciated gaining life lessons.

8 Rocque et al., USA, 2017 [11]

To evaluate implementation of lay navigator-led advance care planning

Mixed-methods design, including thematic content analysis of lay navigator interviews

26 lay navigators in Respecting Choices advance care planning Facilitator training in Southeastern US. Mean age 45, 81% female; 39% Black, 58% White.

Navigators identified key facilitators and barriers of implementation of advance care planning. Facilitators included physician buy-in, patient readiness, and prior advance care planning experience. Barriers included space limitations, identifying the “right” time to start conversations, and personal discomfort discussing end-of-life.

9 Seymour et al., UK, 2013 [37]

To report volunteers’ perspectives on a advance care planning peer education program and feelings on role of volunteer peer educator

Participatory action research; mixed methods including interviews and focus groups

24 older adult volunteers and 8 care staff. 25% below 55 years, 9% over 75 years; 81% white, 6% black

At 6 and 12 months after training, the volunteers’ perspectives related to 1) personal and emotional implications of being a peer educator, and 2) report of community engagement activities in the year after peer education training.