Background Although increasingly recognised as valuable within sexual and reproductive health (SRH) research and service improvement, examples of patient and public involvement (PPI) are underdocumented, including specific issues relating to young people’s involvement. This article aims to contribute to greater transparency about the practical, methodological and ethical considerations of SRH-related PPI with young people, and to offer recommendations for their meaningful involvement.
Methods Guided by a conceptual tool for evaluating youth participation (the ‘7P’ framework), we analysed learning from PPI within three projects (two academic studies and one service improvement project) that worked with young people to shape sexual health research and practice in Scotland.
Analysis Cross-project analysis of seven interconnected domains (purpose, positioning, perspectives, power relations, protection, place and process) generated productive dialogue about the nuances of meaningfully involving young people in shaping SRH research and services. Key learning includes the importance of: young people’s early involvement in agenda-setting for SRH improvement; developing trusting partnerships that can support involvement of diverse groups of young people; creating multiple ways for young people to contribute, including those that do not rely on direct conversation; and formative evaluation of young people’s experiences of involvement.
Conclusions Mainstreaming young people’s meaningful involvement in shaping SRH research and services requires systems-level change. Resources are required to support SRH researchers and practitioners to share learning and build sustainable multi-sector partnerships, which in turn can increase opportunities for young people from diverse groups to engage with SRH-related PPI activities.
- health services research
- patient participation
- sexual health
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Patient and public involvement (PPI) is widely recognised as important for improving sexual and reproductive health (SRH) research and services, but there is a lack of clarity about what meaningful SRH-related PPI looks like, especially when working with young people.
WHAT THIS STUDY ADDS
Frameworks of youth participation can provide useful ‘thinking tools’ for planning and evaluating young people’s involvement in PPI activities, and reflecting on interconnections between practical, methodological and ethical considerations.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
Increasing young people’s meaningful involvement within SRH-related PPI requires more opportunities and resources to enable practitioners, researchers and the wider SRH community to discuss challenges, share good practice, and collaborate.
Involving young people in shaping sexual and reproductive health (SRH) research and services is posited as a way to improve service access and uptake, and fulfil young people’s right to influence policies that affect them (“nothing about us without us”).1 2 Collaboration between SRH service users, providers and researchers is not new, but rather builds on long histories of activism between different communities, allies and health practitioners to progress healthcare experiences and rights relating to, for example, contraception, abortion and HIV/AIDS.3 4 These “grassroots” collaborations increasingly sit alongside a shift within contemporary UK healthcare services and research towards a more formalised language of, and practices associated with, patient and public involvement (PPI) (see box 1). Major health research funders now routinely expect some element of PPI, and various standards and reporting guidelines aim to support researchers with PPI endeavours.5–7 Yet, despite offering exciting opportunities to democratise health improvement, some PPI activities are critiqued for being tokenistic.8 9
Involving young people in sexual and reproductive health (SRH) improvement – a note on terminology
Throughout this article, we use the term ‘patient and public involvement’ (PPI) when referring to young people’s involvement in shaping sexual health research and practice in three projects (two academic research studies and one NHS service improvement project). We recognise that the term PPI, although widely used in the UK at present, is not underpinned by a universally agreed definition or set of practices. Alongside PPI, a variety of other terms such as ‘participation’, ‘engagement’, ‘co-design’ and ‘co-production’ are often used synonymously, yet conceptualised variably in health sciences and allied fields. This poses challenges for communicating across disciplines, sectors of practice and national contexts. Debates around terminology relating to practices of involvement are beyond the scope of this article, which aims to critically reflect upon young people’s involvement in shaping sexual and reproductive health research and practice.
For further critical discussion of participatory practices (broadly defined) see Palmer on the ‘participatory Zeitgeist’,28 Fransman on engagement,29 Williams and colleagues on distinctions between co-production and PPI9 and Redman and colleagues on co-production of knowledge.30
Within SRH, some argue that there is lack of clarity about what good PPI “looks like”.10 In part, this may stem from limited advice about how to translate general PPI guidance into appropriate practices within SRH, where stigma and need for privacy may mitigate against visible involvement.11–13 Particularly remarkable is lack of attention to the specific challenges of involving young people (hereafter referred to as YP) in SRH-related PPI – a surprising absence given that this age group continues to experience a high burden of poor sexual health outcomes,14 15 and may be especially susceptible to power differentials within PPI. Opportunities to advance practice are further constrained by limited publication; despite initiatives to increase the visibility of SRH-related PPI,16 the category for submission of articles focused on involvement often remains unclear, and likely only a fraction of PPI is “written up”.17 Among published work, a revelatory audit of PPI within UK SRH services and research illuminated various challenges including: reports of innovation being undermined by standardised NHS PPI systems; lack of identified PPI goals; conflation of PPI and qualitative research; limited ‘patient satisfaction’ approaches, and poor resourcing.10
In this context of insufficient practical guidance and dialogue, conceptual frameworks of youth participation potentially offer valuable tools to advance YP’s involvement in shaping SRH research and services. Among various models, one of the most influential is Hart’s18 “ladder of participation” which characterises levels of participation according to degrees of power-sharing between adults and YP. While this model draws much-needed attention to power dynamics, it has been critiqued for implying that youth-initiated participation is inherently superior to adult-initiated participation that works to share decision-making with YP.19 Moving away from this hierarchical view, Cahill and Dadvand propose an alternative, the 7P model20 (see online supplemental file), which provides seven domains – purpose, positioning, perspectives, power relations, protection, place and process – as a series of “thinking tools” to aid planning and evaluation of youth participation. This framework emphasises the inter-connectedness of actions across these domains, and the dynamic nature of participatory processes.
In this article, we apply the 7P framework to critically reflect on PPI within three projects (one service improvement project,21 two university-led research studies22 23) that worked with YP to shape research and services. In so doing, we aim to contribute to increased transparency and dialogue about key considerations and challenges (practical, methodological and ethical) relating to SRH-related PPI.
Details of PPI elements for each project are presented in table 1. All three projects were conducted in Scotland between 2018 and 2020 and and were subject to research governance and/or ethics review. With the exception of NB, all authors were members of one or more project teams.
Our analytic process was multistage and iterative. Each project team used the 7P framework to assess strengths and tensions relating to each domain within their project, followed by discussion among all authors to further probe the strengths and tensions identified (see table 2). We then compared issues encountered in each domain across the different projects, and interactions between the domains. Collective discussion occurred during nine virtual analytic meetings. Our team’s multi-sector composition (eg, backgrounds in nursing, public health, youth work, medical sociology) enabled us to compare interpretations and learning points from different disciplinary perspectives.
Analysis of PPI with YP in each project is presented in table 2. Cross-project insights relating to each domain of the 7P framework are presented below.
The 7P model locates purpose (ie, project aim) centrally to convey that this should orient the project, and be regularly reflected on throughout. Each project was initiated by NHS sexual health decision-makers (in one case in collaboration with a youth organisation), either through professional impetus to address a particular issue (eg, recognised need to develop resources on consent), or directly informed by YP feedback about challenges accessing SRH services. Despite adult-initiation, all projects sought to actively involve YP in developing project objectives, and not solely as research participants. YP’s involvement in early-stage priority-setting discussions proved invaluable to honing (and sometimes reworking) the overarching goal and objectives of each project, although differences between YP’s priorities and those commissioning the research required careful management. Where divergent views on purpose arise, creating opportunities to build consensus and feedback loops to communicate the rationale underlying decisions taken are crucial.
The concept of positioning invites reflection on how cultural framings of YP shape what is considered possible in terms of their contribution within PPI. Within SRH research and policy, YP are routinely described as “experts in their own lives” who should be involved in decision-making about services and policies that affect them.24 The extent to which this is realised is, however, debatable. Each of our projects, for instance, aspired to position YP as co-contributors, including intentionally using language of “collaboration” to convey the status placed on their input. Yet these framings sat in tension with other aspects; for example, YP were not in leadership roles across any of the projects, and the format and timing of their contributions was largely decided by project teams. On reflection, opportunities to realise more ambitious positionings of YP were constrained by implicit caution about more equitably shared decision-making, especially in projects that necessitated relationship building with YP within limited timeframes. This raises questions about potential disconnect between intended and actual positionings of YP, especially when PPI activities are one-off. As projects progressed and trust developed, however, YP’s positioning evolved (eg, from “advisors” consulted about predefined issues to “co-creators” involved in generating policy recommendations). Creating space to talk with YP about the terminology used to describe their involvement may help surface tensions around positioning, and mitigate uneven power relations.
This domain requires thinking about diversity in the voices included - and not included - within PPI, and recognising gaps between intention and reality. Our projects utilised various strategies to involve YP with different experiences and identities, including: recruiting through youth organisations supporting a diverse range of YP; co-developing research tools with YP to improve accessibility; inviting input through a variety of means aiming to appeal to YP with different interests and abilities, and intentionally working with YP often underrepresented in SRH-related PPI (eg, care-experienced YP). However, ensuring diversity of perspectives within PPI takes time and resources. Evidence indicates YP can find it easier to engage with research when approached by someone they trust, such as a youth worker or teacher.25 26 An inherent challenge for teams conducting PPI is building trusting, reciprocal relationships with multiple gatekeeping organisations, especially in underresourced sectors where staff turnover can be high (eg, education, third sector youth organisations) and capacity to support YP to engage with research is limited.
As power is relational, the 7P model encourages a critical lens on its distribution throughout PPI. All projects worked to develop an ethos of respect, where YP felt their contributions were valued. This included providing opportunities for participation that challenged power imbalances between adults and YP (eg, involving young advisors in analysis meetings, developing multiple options for expressing ideas and opinions, and foregrounding YP’s ideas in meetings with other stakeholders). Nevertheless, differences in expertise (eg, on research methods), tight timescales and budgets, and institutional constraints can inhibit shared decision-making. A major tension exists, for instance, where professionals are required to shape the project vision and objectives to secure funding and ethical approval to work with YP, thereby constraining YP’s involvement in early decision-making. Possible strategies to mitigate uneven power dynamics within PPI include (co)developing funding proposals (ideally in collaboration with YP) that embed flexibility for projects to be taken in new directions, resource for capacity-building, and time to explicitly discuss power relationships early in PPI activities.
The domain of protection urges reflection on vulnerabilities alongside capabilities, including ways in which PPI may be experienced as a personal, social or political risk. Within the field of SRH, these risks may feel especially acute, with YP concerned about negative repercussions of involvement in projects related to SRH – either during participation itself (eg, stigmatising responses from others in a discussion), or stemming from others’ (eg, parents, friends) knowledge of their participation. Our efforts to promote protection included collectively agreeing ground rules for group work with YP. Yet, for the most part, safety procedures were limited by being decided by researchers, approved by ethics committees, and only then enacted with YP. In contrast, the 7P model invites reflection on ways that YP can be positioned as “co-creators of safety”, again underlining the importance of YP’s early involvement in shaping PPI practices.
The 7P model conceptualises place as both physical and relational, and calls for consideration of the “exclusionary and/or inclusionary implications” of spaces in which participation occurs. Within in-person PPI activities, sensitisation to the significance of place led teams to arrange meetings in settings familiar to YP (eg, youth centres). In these venues, researchers were the “outsiders” required to find their bearings and navigate the social and logistical uncertainties of unknown environments – a strategy aiming to reduce power hierarchies, and promote feelings of ease, confidence and safety among YP. Generating such feelings in virtual spaces can be a particular challenge for SRH-related PPI, particularly where YP are concerned about securing privacy to express their views (eg, being overheard at home). Our efforts to promote YP’s comfort participating in virtual PPI included encouraging YP to consider beforehand where to situate themselves; recruiting YP already known to one another for group work; and using digital tools (eg, online polling, collaborative notepads, breakout rooms) to allow those not comfortable talking in larger groups to contribute. Nevertheless, exclusions within these spaces likely still occurred, including among those experiencing data poverty or low confidence using certain digital platforms. Some tools (eg, virtual whiteboards) did not work well via digital devices that YP often use to participate (eg, smartphones vs laptops). Such realities underline the importance of working with YP early on to think through the domain of place, including the ethical and logistical factors that enable safe participation.
Reflection on process encourages attention to alignment between PPI goals and methods. Our projects sought to operationalise our participatory ethos by using methods that facilitated critical dialogue with YP about existing sexual health services and resources, and possibilities for change. Most methods involved group-based activities – some in-person (eg, creative drawing to map factors affecting SRH service use; reviewing films about consent to prompt discussion about future resources) and some remote (eg, co-developing policy recommendations via digital notepads). While these methods generated valuable participation, emphasis on activities requiring direct interaction between YP likely excluded those uncomfortable being visible within discussions, especially regarding sexual health. Moreover, while sustained engagement throughout a project is often valorised as somehow more “meaningful”, expectations of ongoing involvement may be a barrier to those who do not wish, or are not able, to do so. In order to include diverse voices, YP need to feel safe to “dip in and out” of involvement work and know that their contributions will be valued, however short-lived. Participation is routinely framed as “an ongoing conversation” rather than a singular event.23 As such, envisaging conversation as a carousel, where new conversants can join the conversation while others can drop out, may be a useful way to conceptualise inclusive and ongoing dialogue within PPI.
If “we” (ie, the SRH community) are serious about involving young people in improving research and services, creating space for candid dialogue about the nuances, benefits and challenges of PPI is key. Frameworks of youth participation, such as the 7P model, can provide productive “thinking tools” to support these conversations. In our analysis of PPI across three projects, reflection on seven interconnected domains of participation led to new insights that will strengthen our future practice. In table 3 we identify several potential challenges for meaningfully involving YP in SRH-related PPI, and offer practical recommendations at two levels – action that can be taken within specific projects, and calls for change within the wider SRH system.
Key learning suggests that mainstreaming the meaningful involvement of YP within SRH service and research design requires system-wide change. In our projects, for instance, limitations arose from YP’s involvement being sought too late (ie, after projects had been conceived, funded and ethically reviewed), with limited time and resources to build trusting relationships with organisations that might support the involvement of a more diverse range of YP. Solutions to these issues extend beyond the scope of discrete projects. A systems perspective27 may be especially valuable for developing ways to positively disrupt current decision-making within SRH research and improvement and manifest a system where YP’s contributions are sought, valued and enacted as standard practice. What new structures and relationships are required to facilitate this, and how can these be coordinated and sustainably resourced to enhance YP’s involvement? Potential features of systems-level change might include: increased buy-in among SRH decision-makers to the understanding that YP’s involvement is integral to improving research and services; greater flexibility from funders for projects to adapt in response to YP’s contributions; and sustained investment in SRH-specific PPI communities of practice to build capacity and facilitate cross-sector collaboration among organisations supporting YP, including those often underrepresented in participatory processes.
Evaluating PPI is key to understanding what is (and is not) working, and adapting practice accordingly. As SRH services and systems seek to recover from the COVID-19 pandemic and innovate practice, we need to listen to YP and share new ideas about how to create spaces for meaningful PPI that feels safe, inclusive and keeps pace with ever-changing digital environments. It is incumbent on us to shift our practices of involvement in ways that meet YP’s needs, rather than tokenistically satisfying PPI expectations placed on us as researchers or practitioners.
Patient consent for publication
This study involved human participants. The two academic studies received ethical approval from: CONUNDRUM - University of Glasgow College of Medicine & Veterinary Life Sciences Ethics Committee (200190023), and Communicating Sexual Consent - University of Edinburgh College of Arts, Humanities & Social Sciences Ethics Committee. Participants gave informed consent to participate in the study before taking part.
The authors sincerely thank the young people who were involved in shaping these three projects. They also thank colleagues from these projects who provided feedback on an earlier draft of the manuscript (Eric Chen, Kirstin Mitchell) and others involved in the projects described (Helen Berry, Nicky Coia, Johann Duffy, Cynthia Graham, Yvonne Kerr, Amanda Mongey, Niki Powers, Julie Riddell, Autumn Roesch-Marsh, Felicity Sung, Jill Wilson).
RL and NB are joint first authors.
Twitter @drruthlewis, @NBW80
CB, ZC, KK and CM contributed equally.
Contributors RL and NB conceptualised and co-drafted the manuscript, with contributions from CB, ZC, KK and CM. CM identified the 7P framework as an analytic tool. RL and NB designed and managed the iterative analysis process, and are guarantors for the manuscript. All authors were involved in analytic discussions. All authors read, reviewed and approved the final manuscript.
Funding RL, CB and CM are supported by the United Kingdom Medical Research Council [grant codes MC_UU_12017/11, MC_UU_00022/1, MC_UU_00022/3], and the Scottish Government Chief Scientist Office [grant codes SPHSU11, SPHSU16, SPHSU18]. RL and CM are also supported by the TRIUMPH Network (http://triumph.sphsu.gla.ac.uk) which is funded by the Cross-Disciplinary Mental Health Network Plus initiative supported by UKRI under grant ES/S004351/1. NB is supported by the Health Foundation’s grant to the University of Cambridge for The Healthcare Improvement Studies Institute. The CONUNDRUM project was jointly funded by NHS Greater Glasgow and Clyde, NHS Lanarkshire and NHS Lothian, in partnership with the Scottish Government. The Communicating Sexual Consent study was jointly funded by NHS Greater Glasgow and Clyde, NHS Lanarkshire and NHS Lothian. Improving Care-Experienced Young People’s Access to Sexual and Reproductive Health (SRH) Services in Edinburgh was funded by Edinburgh FP Trust and NHS Lothian.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
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