Co-creating inclusive sexual health services for middle-aged and older adults, including disabled people, in England: an innovative participatory approach within the field of sexual health

The research team partnered with Independent Living Alternatives (ILA), a social enterprise for disabled people, as key community leaders from the start of the study. The two community leaders were key contributors to the co-creation throughout the whole process, and they were joint decision-makers and facilitators for key activities. Additionally, a Community Advisory Board (CAB) comprised of middle-aged and older adults with and without disabilities was convened following the recruitment of community leaders to support the planning and designing of all project stages to ensure shared leadership. Alongside their inclusion, a steering committee group of key stakeholders (middle-aged and older adults, healthcare professionals, disability experts and advocates, and experts in gerontology) was formed to provide additional feedback on discussion topics, and promotion of co-creation activities through in-person meetings and feedback.

Within the research team, two members (EK and HC) coordinated all activities and took responsibility for engaging in conversations with community partners. The session plans, designs and discussion topics for group workshops were developed iteratively, incorporating feedback from the CAB and steering committee group. Discussions were conducted either online or in person, and participants had the option of one-on-one or group conversations based on their preferences. For a detailed guide to the workshop utilised in the session, refer to a paper from the SHOAR project.²⁰

We also co-developed a topic guide for one-on-one co-creation interviews based on previous research findings on sexual health services with this age group (Supplementary material file S1).¹⁸ Agreed discussion topics included: experiences with sexual health services, suggested improvements to sexual health service provision, sources and content of sexual health information for middle-aged and older adults and disabled individuals, and definitions of sexual health for this age group.

Promotional materials, consisting of a combination of text and graphics aimed at explaining the study and encouraging engagement, were developed through an iterative process in collaboration with the CAB, steering committee group and professional illustrators (Supplementary material file S2). Community leaders provided recommendations on promotional material and language to ensure the appropriateness and acceptability of all promotional materials to the target population.

Promotion of the co-creation workshops took place from 1 April to 27 May 2023, through a hybrid approach, such as social media (Twitter, Instagram, Facebook, LinkedIn), organisational newsletters (Independent Living Alternatives), Inclusion London, Shaping our Lives, Eventbrite and professional networks, such as staff and community listservs, to ensure outreach to diverse populations. Interested participants were asked to complete an online registration form for the co-creation workshops.

Key community leaders and the CAB leveraged their positions embedded within the community to encourage participation, improving the perceived validity of and increasing public trust in the research study. Co-creation workshops and interviews were open to all ages, but focused on middle-aged and older adults, and disabled people.

Each co-creation session was facilitated by two or three members of the research team, in collaboration with four community facilitators. The community facilitators were identified with support from community leaders to build trust and encourage participation. Among them, two were community leaders who also acted as facilitators and self-identified as disabled adults. A third facilitator, who also self-identified as disabled, was initially a participant and later joined the facilitation team. The fourth facilitator was a healthcare professional who had been introduced via a sexual health organisation, and who conducted research on sexual health among older people.

Community facilitators were required to meet the following criteria: have experience with small group facilitation; be aged ≥45 years old, or be an older adult researcher or other key group; be willing to write up a brief description of the event; help people submit ideas; and deal with logistics. Facilitators were supported by a facilitation guide (Supplementary material file S3), which provided guidance on group work, inclusivity and presentation of topics. However, these requirements were flexible, allowing for reasonable adjustments to ensure inclusivity. For example, facilitators with disabilities could request additional support, such as an assistant, to help with tasks like writing. Each facilitator received £120 GBP after the discussion as remuneration, and all participants signed an informed consent form. £50 GBP was provided to each participant as remuneration for their time and expertise.

In all sessions, discussions tended not to be dominated by any particular voice, and facilitators did their best to manage social dynamics to provide everyone with equal opportunity to participate. Additionally, to minimise the risk of biasing discussions, facilitators generally prompted discussions with open questions or scenarios, taking notes on responses.

Data collected during the co-creation workshops and interviews consisted of facilitator observations, participant reflections and suggestions on how to improve sexual health services for middle-aged and older adults in the form of written and typed notes. For one-on-one sessions, audio and video were recorded from the interviews after obtaining participant consent. Facilitators’ notes from all co-creation workshops were collated and organised by co-creation leads, and stored in an encrypted LSHTM OneDrive folder. Any identifying information in the notes and transcripts was deleted.

Facilitator observations and reflections provided general feedback on how they felt about their experience as facilitators and the success of the workshops. Community leaders who acted as facilitators were asked to complete a short evaluation survey and open-ended questions on the following topics: overall satisfaction with co-creation workshop facilitation, preparedness and support, workshop objectives and expectations, materials and resources, participants, communication, and challenges (Supplementary material file S4). Data were recorded by co-creation leads and stored in an encrypted OneDrive folder.

When disseminating preliminary findings, the previously established promotional networks were utilised alongside communication directly with all participants who consented to continued engagement. Dissemination materials (e.g. infographics, presentation slides, posters) were co-developed with the two community leaders to ensure accessibility and acceptability.

By providing detailed information about the activity’s structure and process, we demonstrate the ability to successfully organise co-creation activities alongside middle-aged and older people, including disabled people, in England. The flexibility of workshop structure and content allowed facilitators to make informed decisions to tailor sessions to individual participants, further supporting a high level of engagement. Community leaders’ co-leadership and community-centred involvement across co-creation activities provided empowerment and shared decision-making opportunities, which is often not part of traditional research methods.²²

This methodology is distinct from previous research on ‘co-creation’, and it provides examples of surface-level engagement, which simply asks communities for feedback on information and ideas generated by the research team.²³ Our co-creation efforts involved and empowered community leaders with lived experience, and partners at all stages, ensuring they shared ownership over the study from start to finish. As such, our findings also have practical implications for healthcare providers and public health professionals by providing guidance on community engagement.

When asked about their sense of preparation and support to lead the workshops, community facilitators noted that the presence of the research team and key community leaders in the sessions led them to feel adequately supported and prepared to lead. One noted that, she ‘appreciated support from staff…[as] it’s important that the [community] facilitator feels supported and has opportunity to have backup support [from research staff].’ One community facilitator noted that ‘disability organisations are regularly asked for research participants in a ‘faceless’ way’ and felt that the ‘research team’s presence helped to address that perception among participants’. Another emphasised the importance of co-leadership between the research team and community members in noting that it helps participants ‘to understand that this isn’t ‘public sector duty’ research, but ‘a real project that’s going somewhere’.

Overall, including middle-aged, older and disabled adults as facilitators for co-creation workshops was highly valued, with one community facilitator reflecting that ‘participants noted they enjoyed it and felt they learned things…[and] the research has triggered a number of follow-on conversations.’ In doing so, group discussions centre participants, create space for diverse ideas and provide an opportunity to share challenging experiences safely.

Meanwhile, facilitator reflections and feedback revealed that there was a very high level of satisfaction with the events overall. They noted that ‘finding an accessible venue, [and] coordinating people [to attend]’ were the most challenging elements of event organisation. We encountered venue accessibility challenges when arranging in-person workshops for disabled people to have physical accessibility (e.g. having adequate transport and parking facilities). Although our research study originally aimed to capture ideas across the UK, all in-person events were limited to London and Brighton. Conversely, virtual co-creation workshops and interviews provided an accessible way for participants who experienced challenges travelling for an in-person event. To make sure there were no technical barriers, we offered technical support sessions over the phone and email based on their preference.

The recruitment of middle-aged and older adults for research on a stigmatised topic proved challenging, particularly among individuals from communities where sexual health remains a taboo subject to talk about.²⁴ However, shared leadership with a community organisation and other key community leaders led to participation in breaking down their misconceptions about ‘sexual health’, which should not be discussed with others, thereby improving their willingness to engage in our research.

When asked about co-creation workshop objectives and desired outcomes, feedback indicated that having a longer lead time to plan group sessions and materials for various audiences, particularly disabled individuals, would be helpful to further improve upon the co-creation workshop implementation. One community facilitator noted that additional time ‘would’ve provided more opportunities to get more feedback and run the sessions better’. Facilitators agreed that in all sessions, participants were thoroughly engaged in discussions, and felt all participants had equal opportunity to share their opinions and reflections when asked about their perceptions of participant engagement.

Finally, the original co-creation plans involved engaging participants in pre-established activities middle-aged and older adults would frequently participate in, such as book clubs or support groups. However, the research team was only able to coordinate one group workshop during a regularly scheduled community support group. The remaining six workshops were organised independently by the co-creation leads and community leads as one-off events. Although facilitators worked to minimise any discomfort during organised co-creation workshops, it is possible that integration into regularly scheduled community groups may yield deeper discussions.