UPSIDES - Recovery Through Peer Support

Peer support (PS) is a well-established intervention within mental health services (MHS) internationally, involving a person recovering from severe mental health problems (SMHP) in supporting other users. International studies have shown that PS strengthen people with SMHP recovery and social inclusion but also highlight the need for larger effect studies on specific manualized PS interventions. Despite international research showing benefits of PS in MHS, PS an underused type of support in Sweden. There is a clear and urgent need for more Swedish research developing and evaluating the efficacy of PS interventions for persons recovering from SMHP in terms of their recovery journey) and in shifting Swedish mental health services towards a recovery focussed model. In meeting this need the current project aims to evaluate the efficacy of a novel co-produced and manualized PS intervention, the UPSIDES-Swe, in Swedish MHS. Our objectives of introducing and evaluating this peer support intervention aims at increasing the crucial aspects of both recovery, social inclusion and related health aspects for the growing group of people with SMHP, while also investigating implementation issues of a new intervention. The prevalence of people living with SMHP in Sweden is increasing and there has long been a call for the evidence-based interventions in MHS aiming to improve the recovery of this vulnerable group. Historically, mental health services have almost exclusively focussed on delivering interventions and strategies that stress users compliance with treatment plans, largely failing to consider an individual's personal recovery goals or self-determination. In contrast, recovery oriented services reject this paternalistic approach, delivering support with users as active partners in their care. At the core of the recovery model is the principle that people in recovery from SMHP are, by virtue of their lived experience, uniquely qualified to support other users within MHS. Peer support workers (PSW) are those with lived experience of mental illness who have experienced their own recovery process, and once trained are employed to provide support to others with SMHP. PS is hence an essential component of recovery-oriented services, underpinned by the belief that those having personally experienced mental illness and a recovery process, are uniquely positioned as equal partners to offer support, encouragement, and hope to others recovering from SMHP. Early international research on PS highlighted that PSW were central in enabling positive long-term outcomes in those with SMHP. For example, service users supported in their recovery journey by PSW reported better quality of life, recovery, empowerment and functioning, improved social functioning and social integration, increased experience of social inclusion, better self-esteem, a sense of hope and control, all essential components in recovering from a mental illness. A parallel line of research examining the efficacy of recovery models utilizing PSW suggests that service users required less support, reduced their substance abuse, had fewer hospitalizations, and experienced decreased levels of depression and psychosis. While there is a significant body of evidence supporting the use of the recovery model and PSW, there is a clear need for more rigorous and longitudinal research in informing an optimal approach to service delivery and the impact of this model on longitudinal outcomes. Also, a recent systematic review of randomized controlled trials (RCTs) investigating peer support interventions concluded that future research was needed utilising RCTs with robust designs and comparable co-created interventions to further investigate the evidence of peer support interventions. While initially introduced in the USA in the nineties, PSW are now internationally an essential and natural component of many CMHS but in Sweden there is still much work to be done. The PS movement in Sweden emerged in mid-2010 with the leading user organization in Sweden, The Swedish Partnership for Mental Health (in Swedish: Nationell Samverkan för Psykisk Hälsa) (NSPH) educating and implementing PSW in services. In developing the Swedish PS educational program and model, the NSPH has extensively collaborated with both researchers in the field, who are also the applicants of this grant, and leading international organizations implementing PSW in other countries. Results of the implementation of PSW in Sweden (our pre studies) demonstrated that while this support was key in users' recovery PS also needed further attention regarding both what type of interventions PSW provided and also regarding implementation issues due to a lingering medical paradigm in which expert knowledge is prioritized over the experiential. Even though users report being fully supported towards recovery by PSW, PSW is still an underused resource in the Swedish MHS workforce with national guidelines requesting further studies to increase evidence. Providing evidence for this workforce would also result in work opportunities as a PSW for the neglected group of people with SMHP. Therefore, there is an urgent need for research evaluating the implementation of a recovery-oriented PS intervention, specifically tailored towards the context of the Swedish mental health system, and its impact on outcomes at the individual and system levels. UPSIDES is a six-country research consortium with expert researchers within recovery and PS that aims to help replicate and scale up formal PS for people with SMHP. In cooperation with users, UPSIDES has developed the UPSIDEs intervention and is currently conducting a multi-site randomised controlled trial (RCT) to examine the effect of the UPSIDES peer support intervention in a geographically diverse selection of study sites. UPSIDES is a 12-week group intervention building on different themes focusing on building knowledge and skills crucial to the recovery journey such as understanding and sharing personal recovery experiences, developing personalized recovery plans, and identifying individual needs, building effective relationships with health professionals, gaining insights into the perspectives of relatives, and promoting social networking and community engagement. The UPSIDES model is that the project has followed its implementation in a diversity of welfare and health care systems. This has provided a collaboration with a unique insight into translating and adapting such a model during the implementation process. The current project is part of, and continues to build on, the overarching FORTE financed research program UserInvolve that in collaboration with NSPH investigates a variety of user involvement interventions and movements in Swedish CMHS. In addition, our project on PS has initiated a collaboration with the international research organization UPSIDES, in order to translate, co-produce and test the UPSIDES intervention in a Swedish context. To prepare for implementation and testing of such an intervention, necessary pre studies on the current status of PSW and types of PS support in Swedish settings have been conducted (submitted), an extensive process of co-designing the UPSIDES intervention with PSW, users and NSPH (in manuscript) and testing it in a pilot study (ongoing). This has increased the complexity and time frame of the project within the UserInvolve program, but has resulted in the unique co-produced UPSIDES-Swe, fit to be implemented in Swedish MHS.

In this first RCT in a Swedish setting, the overall aim is to investigate the efficacy of this co produced Swedish version of the group based and manualized peer support intervention, the USIDES-Swe, as compared to treatment as usual (TAU) among 300 service users. We hypothesize that the peer support intervention will be more effective than TAU in terms of recovery (primary outcome at the individual level) as assessed by Questionnarie of the Process of Recovery (QPR) (17), at intervention end. Secondary outcomes such as social inclusion, quality of life, empowerment, as well as symptoms and function will also be targeted and assumed to be in favour of the intervention group. A process evaluation will also be conducted. The specific aims are to evaluate the UPSIDES-Swe including studying the effects on recovery, social inclusion and the other health related factors mentioned, as well as discerning critical implementation factors through a process evaluation.

The research questions are:

Is the peer support intervention, UPSIDES-Swe, significantly more effective than TAU at intervention end (10 weeks) in terms of personal recovery (primary outcome)? Is UPSIDES-Swe significantly more effective than TAU post intervention and at three month followups in terms of other personal recovery aspects (secondary outcomes i.e., social inclusion, empowerment, quality of life)? Is the UPSIDES-Swe, significantly more effective than TAU post intervention and at three month followups in improving secondary outcomes of clinical recovery related variables, i.e., symptoms and functioning? How well can the implementation plan and UPSIDES-Swe intervention be implemented and processes explained in relation to primary and secondary outcomes?

Study design and methods Significant work has been put into the development phase according to Medical Research Council (MRC) framework, in building the knowledge base in the area of peer support. A number of preparatory studies have been conducted highlighting users´ positive experiences of receiving peer support, managers' views of having a PSW in the team, and mapping the current landscape of PSW in Sweden (submitted). The process has also supported the co-producing (with PSW and service users) of a manualized PSW intervention tailored to the Swedish context, called UPSIDE-Swe (unpublished data). The motivation for undertaking this research is driven by a call from service users and advocacy agencies for MHS to deliver more personalised, recovery oriented services. The next logical step in the MRC framework is to evaluate the efficacy of the PSW intervention, while also conducting a process evaluation. Co-production with user organization NSPH is ongoing in all part of the current project with further planned collaboration, as also stated in the signed agreement from NSPH (see attachment).

Research design of RCT A randomized, assessor-blinded, multi-center trial will be performed between the years 2025-2028. A total of 300 service users will be recruited, and half will be randomized to receiving a co-produced peer support intervention (UPSIDES-Swe), added to TAU, and an equal number to TAU. The main hypothesis is that participants in the intervention group will experience better personal recovery (according to QPR instrument) when compared to the group only receiving TAU directly after the intervention and at three month followups. Intention-to-treat (ITT) will be applied and to ensure the trial quality. In all, the trial will be in line with the CONSORT (Consolidated Standards Of Reporting Trials) statement for reporting parallel and non-pharmacological trials, see Figure 1. The protocol publication will be according to SPIRIT framework (Standard Protocol Items: Recommendations for Interventional Trials). The SPIRIT figure is used (Figure 2). A process evaluation will also be performed using qualitative and quantitative methods. Eligible participants must reside in Sweden and be assigned to a MHS. Other criteria are a) being over 18 of age and b) having SMHP (including a diagnosis of mood disorder, anxiety disorder, e.g., PTSD, panic disorder etc., and/or psychotic disorder, for a duration of \>2 years). Potential participants will be excluded if they are acutely unwell or cognitively impaired to an extent that they cannot make an informed decision and/or participate in the group program. An employed PSW at units in community-based psychiatry will provide oral informatio

• Social Inclusion [Срок оценки: Before intervention, post intervention (at 10 weeks), 3 months post intervention]
• Quality of life measure [Срок оценки: Before intervention, post intervention (at 10 weeks), 3 months post intervention]
• Empowerment [Срок оценки: Before intervention, post intervention (at 10 weeks), 3 months post intervention]
• Symptoms [Срок оценки: Before intervention, post intervention (at 10 weeks), 3 months post intervention]
• Function [Срок оценки: Before intervention, post intervention (at 10 weeks), 3 months post intervention]