A community-based participatory research approach to co-designing youth mental health service improvements: A case study from Southern England

Abstract

Objectives:

Existing youth mental health services are unable to meet a rising demand for care. Changes are required to align care with young people’s needs and priorities. In this paper, we present a case study examining the developmental stages of a community-based participatory research project in which young people and professional stakeholders co-designed a youth mental health service blueprint in Southern England.

Methods:

We took a reflexive approach to critique, appraise and evaluate how our subjectivity – as embedded researchers – influenced the research process.

Findings:

In this paper, we reflect on (1) the impact of an immersive approach on the development of trust with stakeholders and participants; (2) our methodology for developing and implementing community-based research and (3) the ways in which the complexity and the fragmentation of youth mental health services affected the research process.

Conclusion:

A participatory approach can be complex and challenging; however, we argue that by engaging with communities and building relationships and trust, researchers can develop a deeper and more nuanced understanding of how to create and shape services that better reflect local needs and priorities.

Introduction

Young people growing up in areas of economic and social disadvantage in the UK are more likely to experience mental ill-health than their peers in wealthier neighbourhoods (Viner et al., 2018). Risks to young people’s mental health are compounded by services that are over-stretched or fragmented, with young people ‘falling through the gaps’ (Whitty and Loveless, 2021). Fundamental changes are required in service organisation and delivery to enhance capacity, reduce mental health inequalities and align care with young people’s priorities. The large funding cuts that followed the UK government’s austerity programme in the early 2010s have had an adverse impact on both the levels of mental ill-health and the provision of care (Marmot, 2020). This included a drop in secondary care provision and a loss of resources for youth workers and youth centres through the ‘Sure Start’ initiative. These services supported vulnerable communities by providing community-based social, pastoral and activity-based support, which facilitated early intervention for emerging mental health problems (Cattan et al., 2021).

Recent policy developments indicate an ambition to develop more youth-centred and place-based services (Charles et al., 2021; Public Health England, 2021). Youth-centred care involves providing: (1) care in non-stigmatising community settings; (2) more convenient appointment times; (3) high-quality relational support that focuses on safety and empowerment; (4) structured treatments that provide pragmatic coping solutions; (5) opportunities to communicate more openly with care providers and 6) greater use of person-centred outcomes (Gulliver et al., 2010; Persson et al., 2017). Place-based approaches involve partnering with local stakeholders to design and deliver services that meet the needs and priorities of local communities.

Reflecting on his seminal report on health inequality in the UK, Sir Michael Marmot (2020) recommends that the social determinants of health (non-medical factors that influence health outcomes) can be tackled in part by mobilising the knowledge and expertise of local community-based organisations. Place-based approaches have been adopted in other high-income countries (HICs), such as Australia’s ‘Headspace’ integrated care model for youth mental health. Headspace emphasises the importance of engaging with place- and community-based initiatives by forming operational partnerships that link primary care and secondary care with communities and Voluntary and Community Sector Enterprises (VCSEs) (McGorry et al., 2013).

Several theories and practices emphasise place, space and the participation of communities in research and implementation. One of the most prominent of these, Community-Based Participatory Research (CBPR), involves mapping, developing, delivering and evaluating services through the active participation of communities (Collins et al., 2018; Rippon and Hopkins, 2015). CBPR emanated from, and has a rich history in, the Global South (Gonsalves et al., 2019; Hall and Tandon, 2017). While there have been calls for the increased use of participatory approaches in health services research (NHS England, 2022), there is a lack of evidence on how they have been adopted and the extent to which they have improved mental health services (Güell et al., 2023). Participatory methods are highly context-specific, reflexive and diverse; however, there is much to be learned by understanding how they are used.

This paper reflects on the situational analysis and co-design phases of a National Institute for Health and Care Research (NIHR)-funded research project named CATALYST (Co-designing and testing an Asset-based TAsk-sharing modeL for Youth mental health Services in deprived communiTies). The project, which runs from 2022 to 2026, is using participatory methods to develop service innovations that address the mental health needs of young people aged 16–25 years in deprived coastal areas of Southern England. During the research process, we have learned lessons that may be relevant for participatory researchers and implementation scientists. We discuss the CATALYST project as a case study and use reflexivity to consider how these methods were applied in the study, how they facilitated our research process, the tensions that emerged through their use and how context affected their use during the research process.

Case study—using community-based participatory methods to develop a youth mental health service

The current study addresses youth mental health service improvements in Brighton and Hove and is part of a larger programme of work taking place in deprived coastal regions in Southern England, which have some of the most pronounced health inequalities nationally (Marmot, 2020). Brighton and Hove is a city of approximately 280,000 people on the south coast of England. Its youth mental health service ecosystem is complex, varied and fragmented.

Case management and the delivery of care are split across several statutory and non-statutory services (NHS Sussex, 2022). The primary responsibility for young people up to the age of 18 is placed on secondary health services known as Child and Adolescent Mental Health Services (CAMHS). For those over the age of 18, responsibility is placed on Adult Mental Health Services. There is little communication between CAMHS and adult services, and poor continuity of care is often observed (Hill et al., 2019). Since the early 2010s, Brighton and Hove has seen the closure of several youth clubs, which functioned as hubs for social and mental health services, in the context of reduced public funding for youth services. YMCA Downslink, a large VCSE, provides much of the coordination and provision of secondary mental health care, and a wide range of small VCSEs have stepped in to provide social and activity-based support (NHS Sussex, 2022).

CATALYST includes four work packages (WPs): a situational analysis, which aims to understand the local context and population (WP1); a co-design and Theory of Change (ToC) process in which service improvements were developed with young people and local professional stakeholders (WP2); an implementation phase where a co-designed service model is piloted (WP3) and an evaluation stage (WP4). The current case study reflects upon the situational analysis (WP1) and co-design (WP2) components of the project, which we refer to as the development stage of the project. As of February 2025, WP1 and WP2 have been completed; piloting and evaluation are not yet underway.

Our situational analysis comprised three components: (1) community engagement and network building; (2) a desk-based review and (3) qualitative interviews with local stakeholders and young people. Community engagement and networking were conducted to identify key organisations and individuals acting to support young people with their mental health. Throughout the development stage, we adopted an embedded approach, which involved co-locating and immersing ourselves within communities, organisations and associations that supported young people. Our method went beyond conventional qualitative research approaches to recruitment by drawing on methods from ethnographic inquiry (Lewis and Russell, 2011). We sought to be present in contexts where care and decisions about care were made by observing and attending multi-sectoral forums (e.g. local meetings of NHS youth-focused mental health support teams) and by carrying out site visits to treatment, support organisations and community-based organisations. These were not formal data-collection activities but laid the groundwork for the formation of working relationships between the researchers and stakeholders.

Our formal data collection and analysis began with a desk-based review of publicly available research reports, analyses and policy documents to build our understanding of the service landscape, the scale of demand and the availability of resources. We then conducted a series of in-depth interviews and focus groups with young people (n = 19), community members (n = 4) and professional stakeholders who support young people with their mental health (n = 11). These interviews were conducted to identify the opportunities/facilitators and challenges/barriers faced by users and providers of youth mental health services and to build an understanding of what stakeholders would like to see from these services.

During the subsequent co-design phase, we aimed to develop an operational ‘blueprint’ for youth mental health service improvements. This included two co-design workshops attended by a subset (n = 11) of the young people who took part in the situational analysis phase. Attendees discussed service requirements based on their priorities, needs and experiences. Outputs formed an initial ‘blueprint’ for a youth-centred and community-based mental health service. Two ToC workshops with professional stakeholders (n = 8) were conducted to formulate an overarching operational plan linking resources, activities and outcomes (De Silva et al., 2014). This plan involved the formation of a partnership with a large voluntary sector provider in Brighton and Hove who would manage the creation of task-sharing mental health support workers to deliver low-intensity mental health support and community navigation to young people with common mental health conditions.

Two ethical approvals were obtained for this project. The first was from Sussex University’s Sciences and Technology Cross-Schools Research Ethics Committee (ref: ER/DG241/17), which covered the recruitment of non-NHS participants. The second was from the UK Health Research Authority Research Ethics Committee (ref: 22/PR/1355), which covered the recruitment of NHS staff.

Reflections on the research process

The two lead authors (TG-J and DG) took part in ‘self-interview’ discussions (Koopman et al., 2020) to explore what worked well and the challenges faced during the developmental activities in WP1 and WP2. Since the lead author had the most active role in community engagement, they took on the role of interviewee during the self-interviews, while the second author guided the discussions chronologically through the major phases of the project. The format of these self-interviews was flexible, with no set interview questions, and the roles of ‘interviewer’ and ‘interviewee’ switched regularly. We focused on (1) personal reflections – our individual expectations, assumptions and conscious and unconscious reactions to the research site; (2) interpersonal reflections – how the relationships between the researchers and stakeholders affected the research process; (3) methodological reflections – how methodological decisions impacted the research process and (4) contextual reflections – how cultural and social nuances of the locality affected the research process. TG-J and DG made notes of the discussions during the meetings, which were used as the basis for this paper. These reflections were developed through ongoing discussions with the full research team.

Personal and interpersonal reflections

By becoming immersed in the local youth mental health system, we gained a rich understanding of how services operated, their networks and the challenges and opportunities they faced. Visits to non-clinical community organisations allowed us to observe the day-to-day operations. During one interview with a young person in a community setting, the interviewee took the researcher on a guided tour around the facility. This enabled the interviewee to provide a more nuanced account of how the service supported young people, helping them articulate their experiences and offering the researcher a more contextual understanding of the participant’s situation. Immersion also created opportunities for incidental engagement with stakeholders, supporting the expansion of the researchers’ local networks. For example, during a visit to a local GP practice, the researcher had a chance encounter with a community member whose work involved supporting young people using arts-based approaches. In another instance, while touring a youth centre, the local manager introduced the researcher to an employment support group for young people. These unanticipated and incidental benefits are noted in other immersive methods, such as ethnographic research (Browne and McBride, 2015).

Building trust between researchers and community partners was essential throughout the project. Several individuals in local voluntary sector organisations and community members expressed feeling over-researched and sometimes exploited by the research community. Armstrong et al. (2023) noted that trust is fragile and fluid and can be easily disrupted by subtle or perceived actions. We chose to extend the time spent on engagement and relationship-building activities by adopting a slower, more responsive approach, acknowledging the immediate demands and needs of stakeholders, and allowing them to set the terms for engagement with the research team. This included asking stakeholders to decide the level of partnership they preferred with the research team, ranging from forwarding emails and sharing documentation and contacts to participating in research activities, engaging in recruitment activities and/or hosting research events. The range of partnership options was discussed during an initial meeting with stakeholders. For example, some organisations preferred limited engagement, offering only email invitations to the young people they supported, while another took an active role in supporting and shaping our recruitment process. One engaged in discussions about becoming implementation and delivery partners in future stages of the project. We also requested that stakeholders choose the physical or online spaces in which research engagement took place.

We initially planned to use a gatekeeper approach to recruit young people, as it is well-suited for recruiting ‘hard-to-reach’ or ‘socially excluded’ individuals (Emmel et al., 2007). It has been noted that gatekeepers tend to grant access to participants or communities if they, and the communities they engage with, benefit from the research, and when the researcher actively participates in the community (Waller et al., 2024). We sought to act in a mutually beneficial way and actively engaged with stakeholders where possible, by clearly defining the researcher role and specifying what added value we could bring and what was outside the scope of our research. For example, the researchers worked with an employability service to offer structured involvement in the research, including a community researcher role. The community researcher role was paid, and two members of the target population supported the development of research materials and facilitation of co-design workshops. The project also had an advisory group, including local young people recruited during our community engagement process.

However, early in the project, we found that gatekeepers were often unable or unwilling to connect us. Upon reflection, this may have been because stakeholders’ relationships with young people were also fragile and trust-based, making them cautious about exposing young people to the research process. As we moved into the implementation phase of the project, we continued to find that partners remained wary of the research process, especially in terms of safeguarding and data protection, despite our trust-building efforts. We therefore decided to adopt a more collaborative co-production approach which involves power-sharing and delegation in implementation activities.

As part of this, we have offered to share our study protocol and materials with implementation partners prior to submission for ethics approval so partners can ensure procedures align with their organisational policies and are acceptable to the young people they work with. One partner suggested an adaptation to the implementation plan in which the intervention would include oversight from a trained member of their team, while another suggested we make use of measures they already use as part of their key performance indicators to ensure the intervention aligns with their working practices. Throughout the project, we have tried to balance the tension between recruiting participants eager to participate and seeking out overlooked and underserved young people. In the later stages of the research, we found success recruiting through gatekeeper organisations not focused on mental health support (e.g. sports clubs, arts groups and youth employability services).

The establishment and expression of shared interests, goals and ideals between the research team and stakeholder organisations were crucial for trust-building and engagement. We elicited feedback on our recruitment approach, interview guides and workshop materials. In discussions about future implementation, we emphasised that implementation activities should build on existing work within the community and highlighted the importance of providing coordination and leadership roles to existing organisations, particularly those in the voluntary and community sector.

We have also considered the ethical components of our approach, particularly regarding our positionality as both active community members and independent investigators. These issues of positionality have been discussed in the CBPR literature and can be a challenge for many such projects (Muhammad et al., 2015). Not infrequently, researchers are required to balance both ‘activist’ and investigator roles. The activist position means the researchers feel an obligation to justify and provide benefits for the time and efforts of stakeholders. The investigator role, on the other hand, maintains a critical standpoint focused on robust research practices. We have attempted to address this tension through critical self-reflection within the research team, although this did not fully resolve these issues in the situational analysis phase. Upon reflection, we could have explored more agile and collaborative research practices, making greater use of co-production principles such as delegation and power-sharing. In the situational analysis, the research activities were led by the research team, but in later implementation phases, we hope to delegate and share power with implementation partners, allowing the research team to focus on providing a robust evaluation of the project.

We also considered the ethics of our immersive approach during network building and recruitment. During our immersion, we have made observations and had several conversations with stakeholders that were not part of formal data-collection activities. Some of these conversations indirectly impacted the analysis by adding context to our understanding of the research site, even though they did not constitute ‘data’. These issues are a common ethical dilemma in ethnographic observations. In future situational analyses, greater consideration of the role of observation as a formal research activity is essential. This might be achieved by attaining in-situ consent, where consent is obtained as an observation is made, or by obtaining gradual consent, where consent is attained as relationships with stakeholders are built (Huber and Imeri, 2021). To be clear, we did not make any observations of clinical sessions during this study.

Methodological reflections

We adopted a phased approach to service development, starting with a situational analysis before conducting co-design and ToC workshops. In the first phase of co-design, we focused on young people’s lived experiences of mental health challenges and access to local services. The findings from this phase allowed us to model aspects of service delivery with the potential to improve the quality of mental health support. The structured ToC approach helped stakeholders operationalise the model developed by young people in a way that would be feasible within the local mental health system. We also invited a public advisor, a young person from the target population, to participate in the ToC workshops to facilitate a dialogue between professional stakeholders and a representative from the target population.

Our approach emphasised place-based factors, acknowledging that a service improvement in one site might not be relevant to another. This raised questions within the research team about how service innovations can be taken to scale and whether the process should involve adapting an established intervention in line with UK Medical Research Council–funded ‘ADAPT’ guidance (Moore et al., 2021). Instead, we have considered that the CATALYST approach should focus on ‘scaling-out’ rather than scaling-up (Aarons et al., 2017). This means the findings and practices from our first site will aim to influence other sites, whereby local service improvements will be shaped on a site-by-site basis to meet the specific needs and capacities of each location.

While this stage of the project focuses on the development and implementation of methods and interventions at one site, the goal is to scale out to a second and third site in West Sussex and East Sussex, respectively. Both coastal areas have high levels of deprivation, and we are conducting a process of adaptation and partnership building. Small, agile and localised statutory service teams and voluntary and community sector organisations can be highly active innovators in youth mental health care (De Wit et al., 2019). By adopting a scaling-out approach, we aim to avoid the ‘top-down pitfall’, in which the needs of end-users are not adequately assessed, and the ‘contextual pitfall’, in which the contextual factors of new sites differ from those in the original site (Zomahoun et al., 2019). The disadvantage of this approach is that it may not be well-suited for the development of large regional or national-level programmes aiming to provide comparable care across all areas. However, it has proven effective for locally focused intervention development, allowing us to identify organisations providing mental health support to young people that align with their priorities and needs.

By using a CBPR approach, we aimed to strike a balance between fully sharing power with participants in the community and incorporating approaches based on our previous work related to task-sharing (Michelson et al., 2020) and social recovery therapy (Berry et al., 2022). We were also mindful that anything we developed must be realistic, feasible and aligned with the strategic agendas of local funders and decision-makers (NHS Sussex, 2022; Wolpert et al., 2019). Balancing academic, strategic and community/participatory needs has required ongoing effort and is a challenge in all research involving stakeholders with unequal power dynamics (Gaventa, 2006). The power imbalances in our context are deep and historical, and while we cannot eliminate them, we have aimed to navigate them thoughtfully. Ultimately, those funding and managing local services and organisations hold a louder voice and more influence.

Our role during the situational analysis was to bring together established evidence-based practices with the needs and agendas of communities and to effectively synthesise and communicate findings from all stakeholders. We achieved this by interviewing a broad range of stakeholders during the situational analysis phase. These insights then informed the co-design phase, which exclusively involved young people. The outputs from this phase were brought to a group of local professional stakeholders for further refinement and adaptation. Through these iterative discussions, we have been able to develop an implementation plan that reflects a range of stakeholder perspectives.

Contextual reflections

During our early engagement with professional stakeholders, we learned about a youth mental health service ecosystem that was fragmented and evolving in complex ways. Organisations were constantly changing, with some ceasing to exist and others emerging to fill the gaps. We sought to build connections across many organisations, which often did not share aligned infrastructures, practices or processes. As a result, we were frequently pulled in multiple directions by stakeholders with differing needs and priorities. For instance, the needs of large voluntary, community and social enterprises (VCSEs) with expansive caseloads across the city were different from those of smaller community organisations, which might only support a handful of young people, often from a single neighbourhood. This disparity meant that our early immersion was somewhat shallow, as a considerable amount of time was spent moving from one stakeholder to another, trying to identify where and how the project could have the greatest impact.

Throughout the interviews with stakeholders, we consistently encountered themes of complexity, fragmentation and gaps between needs and available services. When young people sought care, they often hoped that their help-seeking would lead to a coordinated, holistic response within a joined-up system. However, in reality, care providers operated within different organisational structures, each with its own culture, terminology, procedures and goals. This led to limited collaboration between complementary services. The complexity was further compounded by the lack of clear assessment pathways, meaning that young people often had to navigate access points themselves, resulting in longer waiting lists (Rickwood et al., 2015). This theme was so prevalent throughout our research that it became a central focus in both our co-design and ToC activities. All stakeholders highlighted the urgent need for joined-up, cross-cutting working practices to help young people more easily navigate the service landscape.

Conclusion

CBPR has the potential to empower and engage young people in the development and implementation of youth mental health services. In this paper, we have reflected on our application of CBPR to co-design local youth mental health service improvements. Increasingly, research practices are focusing on issues of place and context by listening to local voices (Rippon and Hopkins, 2015). By adopting a place-based approach, the CATALYST project aims to foster a better understanding of the practical considerations for using participatory research methods within a complex service landscape.

Throughout this project, which is due to be completed in 2026, we have embedded ourselves within community organisations to allow for a flexible, bottom-up approach to understanding the local service landscape and the needs of young people. This approach views service development as a decentralised and highly localised activity, in which communities themselves become active agents of change. The localised approach adopted in this project sets the stage for later stages of CATALYST, where we will build upon the relationships developed to identify a community-based organisation that will implement the co-designed model in Brighton and Hove.

We plan to scale the model to additional research sites in deprived coastal regions of Southern England, partnering with established VCSEs in these areas. This will involve a locally driven co-production approach, ensuring the model is adapted to the unique context of each community. Through an iterative process, the CATALYST model will be continuously refined to enhance its relevance and effectiveness for young people in areas of high socio-economic deprivation.