Table 3

Recommendations for meaningfully involving young people in sexual and reproductive health (SRH)-related patient and public involvement (PPP)

Challenge/problemRecommendations for project level actions (eg, PPI within specific research studies and service improvement processes)Recommendations for systems-level change
Young people’s involvement is sought too late, minimising opportunities to meaningfully shape project purpose and objectives
  • Build relationships with and capacity of YP to enable engagement in the early stage of projects.

  • Involve YP early and often in agenda-setting discussions shaping the direction of research or service improvement processes.

  • Increase buy-in from those with decision-making power in SRH (eg, clinical leads, policymakers, commissioners) to understanding that YP’s involvement in shaping SRH services and research evidence is integral to improving sexual health.

  • Increase commitment to, and accountability for, involving YP in SRH agenda-setting activities at local and national levels (eg, via participatory policy processes; SRH professional association activities; as lay reviewers of SRH grant applications).

  • More resources available to involve YP in early-stage development of research grant and service improvement projects (eg, seed funding so YP can be compensated for their involvement).

  • Flexibility from funders (including in how budgets are spent) so that funded projects with ongoing PPI can be responsive to input from YP (eg, regarding project objectives, methods, and outputs).

  • Organisational resources invested in building capacity and confidence among SRH practitioners and researchers to plan, conduct and evaluate PPI.

  • More resources to support SRH stakeholders to build multi-sector partnerships, share learning, and collaborate regarding PPI with YP.

Young people are not aware of how their input shapes project direction and outcomes
  • Prioritise feedback loops to communicate how YP’s contributions are shaping research or services. Ask YP how they want to keep in touch (eg, do not assume email is the default preference, or that YP all prefer the same communication approaches). Share project updates widely using multiple modes of communication (eg, email newsletters, blog posts, updates on social media).

Lack of clarity about young people’s roles within PPI work and position in relation to others (eg, researchers, people running SRH services, other SRH stakeholders)
  • Talk with YP early on about possible roles within a project, and the terminology used to describe them and their involvement.

  • Talk explicitly with YP about potential power dynamics (eg, between YP and project teams, between YP themselves), and collaboratively develop strategies to minimise these.

  • Be explicit about institutional (or other) constraints on resources and capacity and how these might shape what happens in a project. Continue to be honest about these constraints and limitations throughout the project, even when that feels uncomfortable.

  • Keep checking in on YP’s experiences of positioning and power dynamics as projects evolve.

Lack of diversity in groups of young people involved in PPI work
  • Invest time in building trusting multi-sector partnerships (eg, collaboration between NHS, third sector and community organisations, academic researchers) to support diverse groups of YP to be involved, including groups often underrepresented in participatory processes relating to SRH.

  • Consider how methods of involvement might limit participation from particular groups of YP. Do you have flexibility to offer options of how to participate? Can you ask groups who are missing from the research about whether and how they would like to be involved?

  • Consider how location of PPI can shape involvement. For in-person activities, be mindful that institutional spaces (eg, SRH clinics, university offices) may inhibit YP’s involvement. For virtual activities, be mindful of inequities in data and WiFi access, opportunities to find private space and confidence to speak online.

Young people may be concerned about negative repercussions of involvement in projects related to SRH
  • Talk with YP early on about how to create safe and inclusive spaces for PPI in relation to the particular project.

  • Openly acknowledge potential issues around stigma and consider options for involvement that allow YP who wish to maintain privacy to still participate in a wider “conversation” (eg, options that do not rely on face-to-face discussion with other YP).

  • Build YP’s views into developing safety protocols and institutionally-required ethics applications, ideally in collaboration with YP.

Young people may be concerned that they are expected to give more time or commitment to PPI activities than they wish or are able
  • Celebrate the value of YP’s contributions, whether one-off or ongoing. Find ways to summarise previous input and create a sense of ongoing conversation between YP involved throughout the project.

Lack of understanding of young people’s experiences of being involved in PPI, and how their participation strengthens projects, limits development of more meaningful PPI practice
  • Create mechanisms to regularly evaluate involvement processes so that YP can easily and safely feed back on their experiences (eg, via anonymous online polls after meetings/workshops). Integrate learning about what is (and is not) working into future practice.

  • Create mechanisms to evaluate the impacts of involvement by documenting YP’s participation and the changes that it makes to strengthening SRH research and service improvement.

  • PPI, patient and public involvement; SRH, sexual and reproductive health; YP, young people.