Box 1 A Blueprint for Involvement

Enabling access to involvement

• Wherever possible, co-researchers should be recruited at project inception and employed throughout and sufficient time and funding allocated to navigate governance procedures and to provide training and mentoring support

• Recruitment for co-researcher roles should emphasise the value that lived experience can bring to a project rather than focusing on formal qualifications

• Recruitment should aim to engage with a broad range of young people with lived experience by advertising roles beyond existing networks and recruitment channels

• Applicants for co-researcher roles should be reassured that they will not be expected to disclose details of their lived experience

• Recruitment should emphasise the provision of training for co-researchers such that previous research experience is not always necessary

• Recruitment should emphasise the potential benefits of involvement to co-researchers such as what they can gain from the role

• Co-researcher roles should incorporate flexibility in the hours worked and the methods of involvement to ensure the role is manageable to those with other commitments such as study, work or caring responsibilities in order to broaden access

• Research teams need to be flexible to fit in with co-researchers’ other commitments and offer to hold catch up meetings with co-researchers who are unable to attend a scheduled project meeting

• Employing a cohort of co-researchers can assist with providing flexibility of involvement whilst meeting the needs of the project and offering a supportive peer environment

• Governance procedures (e.g., NHS research passport approvals) should be reviewed to facilitate involvement of young co-researchers without unnecessary bureaucratic delays

Supporting involvement

• Training in research methods should be provided to enable co-researchers to feel confident in the role and to enable a full contribution to be made. Training should incorporate both taught and practical sessions to aid preparedness for the role

• Training should incorporate a session on how lived experience might inform the role and to provide an opportunity to discuss expectations, appropriate sharing of information and any concerns regarding lived experience status. Inviting an experienced service user researcher to share experiences is recommended

• Ongoing learning and support for professional development should be encouraged by providing access to organisational resources wherever possible

• Training may need to be tailored to meet the specific needs of a cohort or to provide additional support sessions as needed. An initial ‘getting to know each other’ session to check on previous experience and level of research knowledge can be helpful in tailoring sessions for a specific cohort as well as building cohesion in the group

• Training sessions should also facilitate the cohort to develop as a group and to build in peer support strategies, for example, buddying up in pairs. If the training is being delivered remotely the use of break out rooms are helpful in this process

• Mentoring support should be provided alongside research methods training to ensure co-researchers are fully supported and nurtured throughout their involvement. It may be helpful to partner with a specialist organisation to provide this role and this should be costed in during project planning and sufficient time allocated to complete any contractual requirements

• Mentoring and support needs should be determined on an individual basis for each co-researcher and regular one-to-ones should be provided

Regular meetings should be held between a representative of the research team and the person/organisation responsible for mentoring to facilitate updates on project progress and co-researcher tasks and to ensure the research team are aware of any additional support needs or breaks needed for co-researchers

• Delays should be avoided between research training and related project tasks. It might be helpful to stagger training throughout the project to align specific modules with different phases of the project. Where delays are unavoidable refresher sessions should be held

Optimising involvement

• Choice and flexibility about the level of involvement and the ways in which co-researchers can contribute to a project should be offered wherever possible. Using an opt in approach for each project task can facilitate this process

• Regular contact should be maintained between the research team and the co-researchers as well as regular mentoring support to enable a connection to be maintained even during quieter times on the project (e.g., when waiting for governance approvals prior to data collection commencing)

• It can be helpful to reach agreement as a collective team about how and when communication will take place, e.g., weekly, fortnightly, by email, by Zoom etc. and to alternate meeting days and times to accommodate co-researchers’ other commitments

• Hybrid working should be adopted where possible to meet a range of preferences in working environment and to allow the role to fit with other commitments in order to broaden access

• Hybrid approaches to co-involvement data collection are sensible, particularly when there are few co-researchers employed. For example, specifying in governance documentation that researchers may be accompanied by a co-researcher during participant interviews so that interviews can go ahead even when the co-researcher is not available in order to prioritise research participant availability

• Research teams should be clear from the outset about contracted hours and any funding limits which may impact on involvement at various stages. Wherever possible funding should allow involvement throughout the project from inception to dissemination

• Remuneration for co-researcher roles should be commensurate with the equivalent researcher role, for example, matched to a typical University Researcher scale depending on the level of experience of the candidates in order to ensure parity of status

• Co-researchers should be supported on their journey to involvement in data collection. Initially observing a more experienced researcher undertake an interview can be very helpful

• Meeting prior to co-interviews is essential to plan how the interview schedule will be divided and to ascertain any additional support needs for the co-researcher. Sessions following interviews are useful to provide a shared opportunity for debrief and reflection, to discuss any additional support needs and to plan the level of involvement for subsequent interviews

• Some co-researchers may eventually feel confident enough to lead interviews or to progress to individual interviewing and should be supported to do this where it is appropriate for the project and co-researcher and governance procedures allow

• Research teams should build in time to reflect on the process of co-involvement in order to learn from their experiences and to help co-researchers think about the impact of their involvement and how they might utilise their experiences going forward

• Future research should seek to explore the views of research participants on their experience of being interviewed by young co-researchers and whether the involvement of lived experience co-researchers influenced their decision to take part in the research