Table 2 Categorization and description of methods for engaging older adults and informal caregivers in health policy development

Traditional engagement strategies

Survey interview workshop [45]

Surveys provide a quantitative assessment of older adults/informal caregivers’ views on health policy [49]. An interview is a conversation between an interviewer (who asks questions) and an interviewee (older adults and informal caregivers) who responds to the questions.

For example: survey participants were enlisted through diverse channels such as social media, charities and networks, while interviewees were recruited from community services and care homes. This strategy aimed to ensure the inclusion of older individuals who might lack access to digital platforms, thereby broadening the reach to those who could be easily disregarded.

Priorities for older adults with multiple long-term conditions [45]^*

Health inequalities and potential policy response [68]

Semi-structured interviews [47]

Semi-structured interviews are a conversation between an interviewer and an interviewee (older adults and informal caregivers) based on a semi-structured interview guide, which is a schematic presentation of questions or topics to be explored by an interviewer.

For example, 40–90 min interviews followed by a 10-min survey on personal details were conducted to understand how older adults experience the management of chronic illnesses and how the Australian healthcare system could be improved.

Improving care for people with chronic illnesses [47]

Focus groups

Telephone interviews [42]

Focus groups are composed of a small number (usually 3–8) of older adults and/or informal caregivers to gain a detailed understanding of their perspectives, values and concerns [49]. Participants are interviewed in a discussion setting facilitated by a moderator [69].

For example, seven focus groups of older adults were organized to discuss views on the content and implementation strategies of Pharmacare policies. These were followed by brief telephone interviews with 1699 older adults to ascertain the generalizability of the findings emerging from the focus group.

Medication reimbursement/Pharmacare’s Reference-Based Pricing (RBP) policy [42]^*

Consumer perception of food-related risks [70]

Survey interview group discussion

Telephone conferencing [44]

Surveys (via postal questionnaires), telephone conferencing (four or five members with a facilitator discuss a particular topic of interest), group discussions and face-to-face interviews in participants’ home were used to reach older adults and informal caregivers who would otherwise be precluded.

For example, homebound people and their informal caregivers were involved in planning and monitoring health and social care using community development techniques. They were identified through leaflets, targeted media coverage, and agencies in touch with them.

Health-related concerns of homebound people/quality of life/planning and monitoring health and social care [44]^*

Deliberative engagement strategies

Community juries [46]

A community jury is a group of citizens (older adults and informal caregivers) brought together to receive detailed evidence about and deliberate on a specific (health policy) issue [53]. The term “community jury” is sometimes used interchangeably with “citizen jury”. [71]

For example, two community juries were held over 2 days. Day 1: Prerecorded testimonies from four experts were presented. Day 2: Discussion and debating of evidence and presentation of recommendations.

Government-funded mammography screening [46]^*

Citizens’ jury interviews

Focus groups [29]

Citizens’ juries are a group of selected members (for example, informal caregivers of older adults, usually 12–24) of a community that make recommendations to supplement conventional democratic processes [49].

This deliberative method was used alongside two traditional methods: interviews and focus groups which were conducted randomly with jurors and who at the end of the workshop evaluated and reflected on their experiences [29].

For example, during a 4-day workshop in Bangkok, 12 jurors from five regions participated. The first day involved orientation and the sharing of experiences by family caregivers. On the second and third days, expert witnesses provided briefings on community-based and institution-based long-term care, respectively. The final day included a voting session on resource allocation among 10 policy programs for long-term care. Additionally, informal semi-structured interviews (15–45 min) were randomly conducted with jurors, and focus groups were held at the end of the workshop for jurors to evaluate and reflect on their experiences.

Eldercare policy/long-term care policy [29]^*

Mammography screening [72]^*

Citizen panel [41]

A citizen panel is a deliberative dialogue approach that provides the opportunity for older adults and their informal caregivers to make informed judgments about addressing high-priority issues on the basis of their values and preferences [73].

For example, a citizen panel brought together older adults with complex care needs and their caregivers to elicit their views on improving hospital-to-home transitions after providing them with a citizen brief (evidence from research that served as a basis for the discussions in the citizen panel). They discussed the underlying problem, possible elements to address it and potential barriers and facilitators to implement these elements.

Transitions of care [41]^*

Health technology assessment processes [74]

Policy café carers assembly [17]

Policy café and carers’ assembly are citizen engagement and organizational change process tools which emphasize a comfortable environment in a less formal setting. They emphasize generating an informal and hospitable space where older adults and caregivers’ values and insights are important. Policy café was adapted from the world café – a participatory method for citizen engagement [75] – and carers assembly was adapted from citizens assembly [76].

For example, a policy café was held in a hotel venue, two tables with five participants each, a facilitator for each table, and 2.5 h duration; two tables discussed the two different topics and afterwards participants swapped the tables. Also, a carers´ assembly was convened as a day-long meeting in a hotel room, participants were arranged in round tables of 5–6 persons with a facilitator at each table, four brief presentations on the topic were followed by questions session and each topic was then considered separately in a round table discussion, voting on main issues based on discussion.

Home care legislation and post-diagnosis support [17]^*

Challenges and opportunities of an ageing population [76]

Other engagement methods

Discrete choice experiment (DCE) [48]

A DCE is a survey instrument that clearly explains both a baseline or status quo situation and alternatives that can be chosen [77].

For example, a DCE was used to assess older adults’ preference of a consumer directed care (CDC) approach to consumer assisted care service (CACS) delivery. The questionnaires were researcher administered within a structured DCE and completed individually in a common venue. Each of the nine group exercises consisted of at most 20 older adults with the same 3–4 researchers available to facilitate the session and address any questions.

Consumer-directed care approach [48]^*

Primary healthcare services among older adults with chronic disease [78]

Photo-elicitation [43]

Photo elicitation is the insertion of a photograph by the researcher into a research interview to evoke information, feelings and memories owing to the photograph’s particular form of representation [79].

For example, photo-elicitation was used to explore the age-friendliness of a rural area in Northern England. Participants attended two sessions. The initial session was for information and training in photo-elicitation. In the second session, the photographs from each of the group participants were viewed and discussed.

Age-friendliness of a rural community [43]^*

Inclusion in education [79]

Photovoice and audio recordings [40]

Photovoice is a process by which citizens identify, represent and enhance their community through a photographic technique. Its three main goals are to enable people to record and reflect on their community’s strengths and concerns, to promote dialogue about community issues through group discussions of photographs and to reach policy-makers.

For example, older adults used photovoice to document features of the food and physical environment and then used audio recording devices to develop audio narratives about their observations. These were discussed in community action teams (CATs) meetings made up of 9–12 older adults.

Improving neighbourhood food and physical environment [40]^*

Respect and social inclusion in cities [80]