Table 2

Involving young people in sexual and reproductive health (SRH)-related patient and public involvement (PPI): example insights generated through using the 7P framework as a reflective tool

Example questions reflected on per 7P domainProject 1:
Improving Care-Experienced Young People’s Access to SRH Services in Edinburgh
Project 2:
CONUNDRUM (Condom & Contraception Understandings: Researching Uptake & Motivations)
Project 3:
Communicating Sexual Consent
What opportunities are constructed to enable young people to play an active role in shaping or evolving project objectives?
The ‘problem’ that sparked the initial project idea was identified by clinic- and community-based SRH practitioners based on their experiences of working with care-experienced young people (CEYP) and carers. The project was then designed by SRH researchers and practitioners, who sought research funding. The project team developed the project objectives to redesign care pathways and improve CEYP’s access to SRH services. They sought to centre CEYP as project collaborators, but YP were notactively involved as co-creators of the project vision.YP were involved in shaping study objectives (eg, via workshops to define the ‘problem’ and identify priority questions around which to build evidence). Differences arose between YP’s views that barriers to using SRH services should be a focus of study, and study commissioners’ initial views that these were already well understood so study resources were better directed to exploring wider social influences on condom and contraception use. These differing views on the purpose of the research were discussed with commissioners and the study priorities were reworked to include a focus on services, but more could have been done to communicate with YP about how their input shaped the study purpose (ie, Process).While the project was driven by recognition that YP needed to be involved in shaping resources designed for YP about sexual consent, the project objective (to contribute to development of a short film) was set by study commissioners from the beginning. Although study commissioners demonstrated some flexibility around the project objective at the final research project meeting, opportunities for young advisors to shape the chosen approach to promoting consent were limited by pre-existing institutional funding agreements for the 'output'.
How are young people positioned within the project and wider cultural discourses, and how might this limit what is initially imagined to be possible?
Within UK policy discourse, CEYP are commonly positioned as both “seldom-heard” and “vulnerable”. While aware of reasons for these framings, the project team sought to (re)position CEYP as “active partners” in redesigning access to SRH services. They also wanted to move away from positioning CEYP as “research participants” where their perspectives would be ‘filtered’ through researchers, instead using participatory methods and activities (Process) to create opportunities for direct dialogue between practitioners and YP. However, NHS research management and governance around the need for safeguards (Protection) when working with CEYP implicitly shaped what was imagined to be possible within the project and limited the extent to which YP could shape the methods used (Process).The project team’s positioning of YP as having valuable contributions to make included well-intentioned labelling of their role as “advisors” and “collaborators”. In reality, however, YP’s contributions were on a spectrum of involvement (eg, from one-off to more sustained inputs) that did not always reflect the positioning labels imposed by the research team.YP were viewed by project commissioners and the research team as having “insider” knowledge about YP’s communication about consent and engagement with social media meaning their involvement was seen as an integral and invaluable aspect of research design. Study commissioners’ initial doubts about the feasibility of generating meaningful involvement by YP in the short project timescale were quickly quelled by early input from young advisors on ways to improve the research tools and language used in focus groups/interviews.
Whose perspectives and voices are included, excluded or privileged in the project?
The project team recognised the heterogeneity among CEYP, and devised processes to reach and include those with different experiences of care including kinship care, foster care, care leavers, and YP residing in Young People’s Centres and secure settings. Although the project successfully involved a diverse group of CEYP, the participatory activities used (Process) likely privileged the voices of those most able to share their views and experiences via in-person dialogue with professionals. CEYP who did not engage with health services were not involved, arguably extending a pattern of societal exclusion.Researchers tried to address inequitable patterns of involvement in SRH PPI by holding a series of smaller workshops and meetings with YP (Process), rather than one big event, and approaching youth organisations that support YP with minority identities and experiences (eg, LGBTQ+youth, black and minority ethnic youth). Yet efforts to involve diverse groups of YP via these channels likely inadvertently placed pressure on youth organisations operating with limited funds and receiving multiple requests from research teams. Trusting relationships between research teams and youth organisations need to be built in a sustained and reciprocal way, and there are challenges of doing this in the scope of discrete projects with limited time and resources.Researchers tried to involve young advisors with a range of experiences, sexualities and genders, but tight project timescales and budget meant that recruitment for youth advisors ended up being through existing contacts with YP with previous experience of research about sexual health/sexuality who could quickly engage with the project. Young advisors were mostly women, politicised, white and heterosexual. Partially successful efforts were made to include more diverse views in workshops and interviews, but young men and YP from black and minority ethnic backgrounds were underrepresented.
How were relationships managed to ensure equity and respect was enacted between all parties?
The project team was attuned to the widespread Positioning of CEYP as passive recipients of care within health services and sought to enact respectful relationships through participatory activities that foregrounded CEYP as valued contributors to redesigning SRH care pathways. This informed group agreements around equitable communication and respect for the experience and perspectives of all participants during PPI activities. Although a collaborative working group between CEYP and staff was planned as a way to promote equity, this aspect of the project was not realised. Resource constraints and institutional hierarchies limited the extent to which the priorities identified could be taken forward.Efforts to promote equity and respect between the project team and YP included: (i) foregrounding the value of YP’s ideas and input into shaping the study in meetings with other stakeholders; (ii) involving YP in public discussion about the study findings (eg, as panellists in the webinar to launch the final report); and (iii) prioritising reciprocity between the project team and YP through support for their own endeavours (eg, providing input on research skills to support youth-led initiatives with their own research). Despite these efforts, more equitable power relations were limited by institutional requirements to deliver pre-agreed outputs.Given the sensitivity of the topic and the tight timescale of the project, young advisors were recruited who had strong existing relationships with the researchers and experience of working together on related topics. The young advisors recommended offering options for YP’s participation including making a distinction between workshops about the topic of sexual consent and individual interviews about personal experiences (Process). Offering options within the research process gave YP control over their participation and choice about when and how to share their ideas, opinions and experiences.
What is the balance between practices used to promote protection and those used to enhance participation?
The project team sought to apply a trauma-informed approach. This led them to consider practices that could promote feelings of safety while enhancing CEYP’s participation in discussions about SRH services, for example, (i) collectively agreeing the boundaries of group discussion; (ii) working with CEYP to identify “safe”, “youth-friendly” locations (Place, Power Relations) for group work; and (iii) support from trusted (adult) team members attuned to implicit Power Relations. CEYP were accustomed to talking in a boundaried way, likely because of their experiences of interacting with adults around safety and disclosures. Nevertheless, it is possible that research governance processes, including necessary safeguards when researching around sex and healthcare with YP, served to limit opportunities for YP to define what safety meant to them in this context.The project team was keenly aware that involvement in shaping a study about condom and contraception use could be personally and socially risky for YP. Attempts to promote feelings of safety and privacy included collaboratively agreeing ground rules around disclosures in group discussion, and arranging separate workshops for YP and other stakeholder groups involved in shaping the project (eg, SRH practitioners and policymakers). Although YP appeared to value participating in their own spaces, it is possible that the project team’s Positioning of YP as more comfortable participating separately limited scope for more direct dialogue and balancing of Power Relations between different stakeholder groups.Youth advisors’ existing relationships with the researchers, and previous involvement in sexual health research, meant that they were familiar with organisational safeguarding policies, and had actively and critically considered practices that promote open and frank discussion around sex (including consent) while respecting the need for boundaries around privacy. Acknowledging that talking about sexual consent can act as a reminder of difficult experiences, an agreement was made that a researcher would contact advisors after each meeting to ‘check in’. When co-designing research tools youth advisors encouraged researchers to identify and share additional sources of support in the event of difficult or triggering discussion. Workshops and interviews were organised through organisations that had existing links with the YP and who were tasked with checking in with YP after their participation.
How does the social, physical and virtual context shape what forms of participation are possible or desirable?
The team sought to identify physical spaces conducive to CEYP participating in discussions about access to SRH services. An initial consultation event held within the local SRH service saw no YP attend. The team reflected and consulted with YP on possible reasons for this (Protection, Power Relations) and moved later events to a ‘safe’ location (a youth café) familiar to YP. More could have been done to consult with YP earlier about mutually suitable locations, and to explore the possibilities of virtual social spaces in which YP could meet, extend discussion and build connections beyond the project. However, budget constraints limited options.In order to increase feelings of safety and confidence to participate in discussions about condoms and contraception (Protection, Power Relations), in-person workshops were held in settings familiar to YP (eg, youth group spaces). Due to the emergence of COVID-19 and subsequent UK-wide lockdowns, remaining workshops had to be rearranged virtually at a time of rapid change in social norms and practices of digitally-mediated interaction. Attempts to create safe and inclusive digital spaces for SRH-related discussions included using digital tools (Process) that allowed anonymous input (eg, Menti polls) and recommending ahead of time that YP find a private space where they could not be overheard. However, the unanticipated and sudden shift to virtual workshops inhibited a fuller consideration of challenges of digital SRH-related PPI.Researchers and young advisors recognised the importance of the physical location of meetings in making participation possible, and jointly agreed them. Discussion groups took place in organisations that YP attended and felt comfortable in (Protection). Although facilitating and hosting discussions with organisations offered pragmatic and safeguarding advantages, it also meant that staff acted as gatekeepers to YP’s involvement. In organisations working with YP under and over the age of 16 this led to potentially challenging conversations about the inclusion and exclusion of YP on the basis of age.
How did the methods structure and enable participatory exchange, and critical and creative thought?
The project was informed by experience-based co-design (EBCD), an approach envisioned to enable service users and staff to co-design care pathways. Activity-based methods were used to enable CEYP’s engagement and dialogue around SRH access (eg, feedback exercises; ranking activities; voting on priorities). While these activities were designed with input from the experienced Youth Worker whose conversation with CEYP sparked the initial project idea, project timelines and a focus on identifying feasible solutions (Purpose) limited opportunities for YP to be involved in identifying and developing activities to enable participatory exchange and creative thought.Various activity-based methods were used to surface YP’s views and facilitate critical exchange about the priorities, methods and recommendations of the study (eg, drawing activities; creating and voting on priorities). As different YP were involved at different stages of the study (ie, some YP were involved in multiple conversations, others participated only once), YP’s involvement was framed as an “ongoing conversation”, with concerted effort placed on summarising inputs from earlier workshops/discussions in order to put YP into conversation with one another, even when they were not physically co-present.Involving YP in design of research tools meant that they were more engaging and accessible for the wider group of YP. For example, young advisors’ recommendation to watch and collaboratively review short films about sexual consent was very effective in stimulating discussion. Subsequently, including young advisors in sense-checking findings and meeting with the commissioners towards the end of the process resulted in a rich and creative dialogue that opened up possibilities wider than the original brief. One youth advisor stayed involved beyond the research project and contributed to a multi-year, multi-sector collaboration (including NHS health improvement staff, digital communications experts, youth workers, YP) that resulted in the development of sexual communication films for the commissioners.*
  • Bold text denotes interlinkages between the 7P domains (eg, between Purpose and Process) relevant to a specific reflection.

  • *These films, and details of how they were collaboratively produced, are available at:

  • CEYP, care-experienced young people; LGBTQ+, lesbian, gay, bisexual, transgender, queer and others; NHS, National Health Service; PPI, patient and public involvement; SRH, sexual and reproductive health; YP, young people.