Lived Experience Research Research Articles

Partnership between a consumer-led mental health research network and a large mental health research organisation: an Australian mixed methods case study

AimThis paper presents a case study review of an Australian research partnership between an independent mental health lived experience-led research network and an academic organisation established for the research and treatment of disorders of the brain and mind. The aim of the study was to explore the principles and practical requirements needed for a successful partnership that promotes inclusive research practices and power sharing and provide a framework to improve the operationalization of future similar partnerships.MethodsThis study was led and conducted by lived experience researchers. We used a mixed-method approach to data collection for data triangulation. An environmental scan of peer-reviewed and grey literature on mental health research partnerships was conducted, followed by a three-part data collection with members of both organisations. Data collection comprised an online survey, in-depth interviews, and a roundtable discussion to integrate findings and formulate recommendations.Results and ConclusionThis case study explores and describes a missed opportunity of a consumer led mental health research organisation to work successfully with an established mental health research organisation. Poor communication and unclear processes led to unmet expectations on both sides. Findings suggest the use of reflective practice by team members of both partner organisations may have been helpful in identifying further improvements to inclusive research practice, empowering consumers in inclusive mental health research.

Translating acceptability to sustained delivery: Clinician and manager perspectives on implementing modified constraint-induced movement therapy in an early-supported discharge rehabilitation service.

Modified constraint-induced movement therapy (mCIMT) improves upper limb (UL) function after stroke. Despite up to one-third of stroke survivors being eligible, clinical uptake remains poor. To address this, a multi-modal behaviour change intervention was implemented across a large seven-site early-supported discharge (ESD) rehabilitation service. This study investigated the acceptability of mCIMT implementation within this ESD service and identified adaptations required for sustained delivery. This qualitative study was nested within a mixed-methods process evaluation of mCIMT implementation. Four focus groups (n= 24) comprising therapists (two groups), therapy assistants (one group), and allied health managers (one group) were conducted. Data were analysed using reflexive thematic analysis and mapped to the Theoretical Domains Framework (TDF). Consumers were not directly involved in this study; however, lived experience research partners have helped shape the larger mixed-methods implementation study. Four themes were generated and mapped to the TDF. Factors related to acceptability included interdisciplinary practice in sharing workloads (belief about capabilities), practice opportunities across a range of UL presentations (skills), clinician attitudes influencing patient engagement (optimism), time constraints (belief about consequences), and cognitive overload from multiple systems and processes (memory, attention, and decision-making processes). Factors facilitating sustained delivery included improving stroke survivor education (knowledge), sharing success stories across teams (reinforcement), manager facilitation (social/professional role and identity), and the perception that the ESD setting was optimal for mCIMT delivery (social influences). mCIMT was acceptable in the ESD service, with clinicians feeling a responsibility to provide it. Key adaptations for sustained delivery included ongoing training, resource adaptation, and enhanced patient and carer engagement. Successful implementation and sustained delivery of mCIMT in the ESD service could enhance UL function and reduce the burden of care for potentially hundreds of stroke survivors and their carers. Modified constraint-induced movement therapy (mCIMT) helps improve arm movement after a stroke. However, many stroke survivors do not get this therapy. To fix this, we started a program in a large home-based rehabilitation service. This study looked at how well mCIMT could fit into this service. We also wanted to know what changes were needed to make sure it was regularly provided. We held four group discussions with therapists, therapy assistants, and health managers. A total of 24 people took part. From these discussions, we found several important points. Therapists needed to work together as a team. They also needed to practice mCIMT to get better at delivering it. Therapists having a positive attitude would encourage more stroke survivors to take part. For long-term success, stroke survivors need better education about mCIMT. Managers need to encourage therapists to provide mCIMT. The rehabilitation service should also share their success stories about this therapy to encourage therapists to deliver it and stroke survivors to ask for it. Therapists enjoyed delivering mCIMT in the rehabilitation service. It worked better than other therapies to improve a stroke survivor's arm function. Because of this, they also felt it was their duty to offer mCIMT. Having ongoing training and better resources would help keep mCIMT going. If mCIMT can be provided regularly in this service, it could lead to better arm function and less care needed for many stroke survivors and their carers.

Fostering Prosociality in Refugee Children: An Intervention With Rohingya Children.

Prosocial behavior is a distinguishing characteristic of human nature. Although prosocial behaviors emerge early in development, contextual factors play an important role in how these behaviors are manifested over development. A large body of research focuses on the trajectory of prosocial development across diverse cultures and investigating contexts that foster it. Against this backdrop of developmental research endeavoring to understand and enhance the cooperative side of humanity, is the catastrophic impact of profoundly negative forces on social-emotional development for children forced to flee from violent conflict. Close to half a million Rohingya children, whose families were forced to flee genocide in Myanmar, now live in the largest refugee camp in the world. To examine the resilience of human prosociality in the face of extreme adversity, we documented initial levels of prosociality in Rohingya refugee children living in a mega-camp (Cox's Bazar, Bangladesh) and the extent to which those levels were improved following a multifaceted intervention designed to foster prosociality. The research was a partnership between Rohingya community members with lived experience, humanitarian practitioners, and developmental researchers. A sample of 152 Rohingya children (5-12 years) participated in pre- and postintervention assessments of prosocial behaviors and related cognitive-affective processes. The 10-day collaboration-based intervention was implemented between November 2021 and January 2022 by Rohingya researchers. Birthplace was used as a proxy measure of trauma level. Children born in Myanmar (N = 88) directly experienced relatively higher levels of trauma (genocide, forced migration) than children who were born in the camp after their families fled from Myanmar (N = 64). Children were individually tested pre- and postintervention with a task battery, including a helping (Origami) and two sharing tasks (Dictator Game [DG], Forced Choice sharing) measuring prosocial behavior. Assessments of related cognitive-affective processes included measures of empathic responding and emotion perspective-taking in story tasks (Imagine, Judgment) and executive function (EF) skills (Younger: Hearts & Flowers; Older: Dimensional Change Card Sorting). Small group intervention sessions conducted over 10 days targeted these prosocial behaviors and cognitive-affective processes and were based on collaborative activities, emotion perspective taking and EF skills training with the same partner throughout the intervention phase. We used latent change modeling to examine initial levels (preintervention) and intervention-related changes in these measures from pre- to postintervention. Prosocial responding was found across all measures (preintervention) and improvements (pre- to postintervention change) were apparent across most measures. Age and birthplace variables were significant predictors of initial levels and intervention-related change. Initial levels: Regarding age, older children (9-12 years) showed higher levels than younger children (5-8 years) of sharing in the Forced Choice task but lower levels in the DG. Older children also showed higher levels of empathic responding when asked to report how they would feel and respond to another person's misfortune in the Imagine task. Regarding birthplace, prior to the intervention camp-born children showed higher levels than Myanmar-born children of helping in the Origami task and reported more behavioral responses indicating how they would respond to misfortune in the Imagine task. In contrast, Myanmar-born children had higher levels of sharing in the DG and consistently chose equality over inequality in the Forced Choice sharing task, even when their partner would receive more, indicating a pattern of generosity in these children. Myanmar-born children had lower levels than camp-born children on EF measures. Intervention-related change: Regarding age, older but not younger children were more likely to increase choices for equality over inequality on the Forced Choice sharing task following the intervention. Regarding birthplace and helping, camp-born children increased behaviors that helped their partner make origami shapes themselves ("how-to" helping), whereas Myanmar-born children increased behavior that took over folding for their partner ("do-for" helping). For sharing tasks, Myanmar-born but not camp-born children increased sharing in the DG and showed an increased pattern of generosity in Forced Choice sharing task. In the Imagine story task, children born in Myanmar were more likely than those born in camp to increase empathic responding (i.e., imagining how they would feel). Children born in Myanmar showed less improvement on EF measures than children born in the camp. Taken together, these findings provide evidence that in a context of extreme adversity, Rohingya children exhibited prosociality and benefitted from a multifaceted intervention. Our research adds credence to the view that human prosociality is a fundamental characteristic of humanity that not only survives but can be enhanced in even the most adverse of childhood environments. Our multifaceted intervention, which was implemented within a collaborative social context and targeted prosocial behaviors and related cognitive-affective processes, was designed to be easily implemented within existing psychosocial support programs in refugee contexts. As the numbers of children affected by violent conflict and forced migration rise alarmingly worldwide, there is a critical need to expand research partnerships that aim to improve developmental outcomes for these millions of children.

Incorporating lived experience narratives into interdisciplinary environmental communication projects: A technique for better environmental communication

This paper describes how lived experience research, a qualitative research method based on phenomenology, can be modified and incorporated into interdisciplinary environmental risk communication projects. Lived experience methods can give insight into stakeholders’ needs and concerns, enabling development of better communication products and potentially helping overcome disciplinary barriers on project teams. We describe the purposes and methods of lived experience research, draw upon two cases from our own experiences to outline how methods can be adapted for the contexts of interdisciplinary research projects, and describe potential barriers to and opportunities for using this research method in team communication projects, including co-production of knowledge, internal research team acceptance, and making project products more responsive to user needs.

A Chance to have a Voice: The Motivations and Experiences of Female Victim-Survivors of Domestic, Family and Sexual Violence who Joined a Lived Experience Research Group

A Chance to have a Voice: The Motivations and Experiences of Female Victim-Survivors of Domestic, Family and Sexual Violence who Joined a Lived Experience Research Group

Youth Perspectives on 'Highly Personalised and Measurement-Based Care': Qualitative Co-Design of Education Materials.

Despite high levels of mental ill-health amongst young people (aged 15-30), this group demonstrates low help-seekingand high drop-out from mental health services (MHS). Whilstshared decision-making can assist people in receiving appropriate and effective health care, young people frequently report that they do not feel involved in treatment decisions. The current study focused on co-design of a clinical education and participant information programme for the Brain and Mind Centre Youth Model of Care. This model, which articulates a youth-focused form of highly personalised and measurement-based care, is designed to promote shared decision-making between young people and clinical service providers. We conducted workshops with 24 young people (16-31; MAge = 21.5) who had accessed mental health services. Participants were asked what advice they would give to young people entering services, before giving advice on existing materials. Workshops were conducted and transcripts were coded using thematic analysisby two lived experience researchers and a clinical researcher. Young people found it empowering to be educated on transdiagnostic models of mental illness, namely clinical staging, which givesthem a better understanding of why certain treatments may be inappropriate and ineffective, and thus reduce self-blame. Similarly, young people had limited knowledge of links between mental health and other life domains and found it helpful to be educated on multidisciplinary treatment options. Measurement-based care was seen as an important method of improving shared decision-making between young people and health professionals;however, to facilitate shared decision-making, young people also wanted better information on their rights in care and more support to share their expertise in their own needs, valuesand treatment preferences. These findings will inform the delivery of the further development and implementation of a youth-specific clinical education and participant information programme for the BMC Youth Model. Workshops were facilitated by researchers with lived expertise in mental ill-health (A.H. and/or C.G.) and a clinical researcher (who has expertise as an academic and a clinical psychologist). A.H. and C.G. were also involved in conceptualisation, analysis, interpretation, review and editing of this paper.

Identifying the priorities for supervision by lived experience researchers: a Q sort study

BackgroundLived experience researchers draw on their lived and living experiences to either lead on or inform research. Their personal experiences are relevant to the research topic and so they must manage the interplay of their health and healthcare experiences with the research, population, and data they work with, as well as the more general challenges of being a researcher. Lived experience researchers must navigate these dilemmas in addition to queries over their competency, due to issues relating to intersectionality and epistemic injustice. This justifies a motivation to better understand the experiences of lived experience researchers and develop appropriate and personalised supervision based on their preferences and needs. MethodsQ methodology was used to identify a collection of identity-related issues that impact lived experience researchers during PhD research in the context of the UK. These issues were presented in the form of 54 statements to 18 lived experience researchers to prioritise as topics to explore in supervision.ResultIt was found that lived experiences researchers could be grouped into three distinct factors following an inverted factor analysis: Factor 1: Strengthening my identity, skills, growth, and empowerment; Factor 2: Exploring the emotional and relational link I have with the research and Factor 3: Navigating my lived and professional experiences practically and emotionally. The findings suggest that there may be three types of lived experience researchers, each with different needs from supervision, suggesting the population is heterogeneous.ConclusionThe research identified a deeper understanding of the needs of lived experience researchers and highlights the importance of personalised supervision according to the individual needs of the researcher and their preferences for supervision. The findings reinforce the importance of integrating a clinical dimension into supervision to support the needs of all lived experience researchers.

Co-designing The Healthy Gut Diet for Preventing Gestational Diabetes: Co-design methods and process outcomes.

Gestational diabetes mellitus (GDM) is a common and costly condition of pregnancy. The Healthy Gut Diet for Preventing Gestational Diabetes study is a novel randomised controlled trial that aims to prevent GDM through a diet that modulates the gut microbiota for pregnant women with GDM risk factors. Despite increasing interest in co-designing interventions with consumers (lived experience experts), co-design methods and outcomes are often poorly reported. The present study aims to report on the co-design process used to develop The Healthy Gut Diet intervention. Co-design occurred across three online workshops with consumer participants (women with a lived experience of GDM, n = 11), researchers (n = 6) and workshop co-facilitators (including a consumer co-facilitator, n = 2). The workshops explored women's preferences for the mode and length of education sessions, as well as the types of information and supportive resources women wanted to receive, and undertook a "behaviour diagnosis" to understand barriers and enablers to the target behaviours (eating for gut health). The final intervention is reported according to the Template for Intervention Description and Replication. A co-designed dietary intervention (The Healthy Gut Diet), delivered via telehealth, with a suite of educational and supportive resources that integrates published behaviour change techniques, was developed. Generally, the co-design process was reported as a positive experience based on participant feedback and evidenced by no participant dropouts over the 3-month study period. Co-design is recognised as a process that creates a partnership between lived experience experts and researchers who can engage and empower research recipients and improve health behaviours.

Experience is central and connections matter: A Leximancer analysis of the research priorities of people with lived experience of mental health issues in Australia

Mental health research priority-setting has a long history internationally. Many of these studies use expert panels or consensus methods across multiple mental health stakeholder groups. Whilst such approaches are designed to produce agreed research priorities, there is a risk that the specific and nuanced priorities of less powerful groups, especially those with lived experience of mental health issues, are lost in translation. We aimed to develop Australian mental health research priorities from the perspectives of people living with mental ill-health and their carers, families and kinship group members. A cross-sectional, open-ended survey was conducted nationally in Australia during January and February 2022. We asked participants to list three priorities on which mental health research should focus. Responses were analysed using Leximancer, a text analytics tool, to examine the concepts and their connections across the data. A total of 365 people with lived experience of mental ill-health participated in the survey. The majority (57%) identified as consumers, with 14% identifying as carers and 29% reporting both types of lived experience. Participants were from all Australian states and territories and from metropolitan, regional and remote areas. The Leximancer analysis generated 30 concepts in six thematic priority areas. The most prominent themes were experience, treatment and impact, followed by stigma, peer and trauma. The concept maps displayed complex connections and interrelationships between specific concepts, with lived experience a large and central concept. Analysis of the textual responses emphasised the importance of examining specifics, as the nuanced research priorities traversed themes and concept across the maps. This project provides robust evidence on the central importance of experience as driving mental health lived experience research priorities. Further, it demonstrates that people with lived experience describe the key issues in complex, interrelated ways that require multi-factorial research approaches to address.

Raising awareness of anti-fat stigma in healthcare through lived experience education: a continuing professional development pilot study

BackgroundAnti-fat attitudes and weight-based discrimination are prevalent in healthcare settings and among healthcare practitioners and clinical trainees, and can result in immense harm to patients. There is increasing recognition that anti-fat bias in healthcare is a critical issue that must be addressed, but there is a dearth of evidence demonstrating sustained attitude and behavioural change among clinicians, illustrating a need for more innovative educational approaches and rigorous evaluation. We describe the co-design and delivery of a narrative-based continuing professional development curriculum aimed at raising awareness of weight-based bias and stigma.MethodsOur research team of lived experience educators, clinicians and researchers collaboratively developed a series of seven podcast episodes comprised of narrative descriptions of lived experiences with and impacts of weight bias, stigma and discrimination in healthcare settings, as well as a post-podcast workshop to facilitate reflection and discussion between participants. The curriculum was piloted among 20 clinicians practicing at a large urban hospital in Mississauga, Canada. We explored feasibility, acceptability and learning impact by analyzing responses to questionnaires completed following each podcast episode and responses shared during the workshops and follow-up feedback sessions.ResultsWe observed high acceptability and feasibility of the curriculum. Participants experienced the podcast as a practical and convenient learning format and the workshop as a valuable opportunity to collectively debrief and reflect. The learning impact of the curriculum was strong; participants described a range of emotions elicited by the podcasts, engaged in self-reflection, and expressed a desire to modify clinical approaches. Barriers to the application of learnings identified by participants include pervasiveness of the use of body mass index (BMI) as an indicator of risk and a criterion for referral; discomfort with difficult conversations; prevalent biomedical understandings about the association between weight and health; and clinicians’ defensiveness.ConclusionThis pilot study yielded promising findings and demonstrated potential impact on weight bias and stigma among healthcare providers. Necessary next steps include conducting larger scale, rigorous evaluations of the curriculum among broader populations, both health professions trainees and current healthcare providers.

Lived experience narratives in health professional education: educators’ perspectives of a co-designed, online mental health education resource

IntroductionMeaningful involvement of people with lived experience is an invaluable approach to education that facilitates the development of knowledge, skills and attitudes for collaborative, compassionate and person-centred healthcare practice. The purpose of this evaluation was to gain health professional educators’ perspectives of an online learning resource that presents the lived experiences of people who have been consumers of the Australian mental health system.MethodsA cross sectional study design was used to survey educators who had registered to use the online education resource. Data were collected using an online survey and follow-up interviews. Two lived experience researchers were involved in the research. Quantitative survey data were analysed descriptively, and qualitative data were analysed thematically.FindingsThe Listening to Voices online education resource is being used in a range of settings. Educators perceived the content facilitated achievement of learning outcomes related to understanding the experiences of people with mental health issues. The free, online, and flexible design of the resource promoted access and helped overcome barriers to including lived experience experts in education. The powerful impact of the resource and importance of creating safe learning environments when using the resource were highlighted. Suggestions for future developments were provided.ConclusionInvolving people with lived experience in education of healthcare students and professionals can assist in developing skills for collaborative, compassionate, and person-centred care. Implementation of co-design principles and the use of creative pedagogical approaches can contribute to the development of impactful educational resources that foreground lived experience. Making these resources flexible and freely available online improves their utility.

Centring the voices of survivors of child sexual abuse in research: an act of hermeneutic justice.

Survivors of child sexual abuse (CSA) are known to hold silence and create distance between themselves and service providers for self-protection, as groomed behaviour or to protect the listener from vicarious trauma. Silence for many survivors has also been reinforced as a beneficial action by previous experiences of disclosing and being rejected, challenged, or disbelieved. How can researchers be sure the same dynamic is not playing out in research interviews? Generating reliable research data is an imperative and an act of epistemic justice that enables CSA survivors to testify to the suffering caused by abuse and subsequent trauma distress and to contribute to social discourse for change. Fricker, however, notes that the precursor to testimonial justice is hermeneutic justice. Hermeneutic justice pivots on the dual action of accurate understanding and interpretation, but CSA experiences may be beyond the comprehension of untraumatised listeners because their own frame of reference renders them unable or unwilling (even if unconsciously) to entertain the truth of such human depravity and cruelty. If survivors are not understood, their testimonies can be misconstrued or oftentimes excluded from the generation of epistemic knowledge, leaving the survivors unable to make sense of, and process, their experiences. These are crucial issues for researchers in the field of CSA and other crimes of sexual and gendered abuse. This study considers the operationalisation of a participatory research approach held within a lived experience research paradigm. Such methodologies advocate for peer involvement, which is becoming more widely recognised as supporting testimonial justice and the accurate understanding and interpretation of survivors' testimonies. The issue of validating the methodology and methods is considered, exploring a rigorous data audit and researcher reflexivity as contributors to trustworthy data. Peer and participant safety when researching through lived experience is addressed. Data from a doctoral research study are used to illustrate this article.

Amplifying the voices of Black racial minorities in mental health research through public involvement and engagement: The importance of advisory roles.

Ensuring adequate representation and the active, meaningful and visible involvement of groups likely to be most impacted by research findings and/or the lack of research inquiry are increasingly acknowledged. This is particularly relevant for Black racially minoritised groups who are less visible as research participants and in patient and public involvement and engagement (PPIE) roles. Our viewpoint article sought to discuss reflections and insights on their involvement experience, with particular attention to perceived barriers and enablers to PPIE involvement. Qualitative data were collected as part of facilitated group discussions from nine Black racially minoritised experts-by-experience involved in a PPIE advisory group. Data were subjected to thematic analysis to identify key themes. Five main themes were identified that reflected factors linked to practicalities: role unfamiliarity, benefits for the larger community, acknowledgement of previous harm and mental health stigma. Given the existence and importance of the direct links between research and service and treatment innovations in health and social care, ensuring that those from underrepresented Black racial communities are meaningfully and equitably supported to have roles in advising and influencing research programmes should be prioritised and an ongoing consideration for different stakeholders, including research funders, researchers, healthcare providers and community leaders/representatives. This viewpoint article is a collaboration between lived experience stakeholders and researchers, comprising conceiving the original idea for the paper, its conceptualisation and data generation and the coproduction including editing of the manuscript.

A Constructivist Grounded Theory Study on Mental Health Recovery from a Lived Experience Perspective in Singapore.

More contemporary personal recovery conceptualisation of mental health recovery emphasize the need to consider the perspectives of people who experience mental ill-health. Most lived experience research has been done in Western cultures with relatively few studies in Asian ones, creating a gap that needs to be addressed due to differences in cultural worldviews. This study explores the notion of recovery from the lens of people experiencing mental health challenges in Singapore. We adopted a constructivist grounded theory perspective to evaluate qualitative data from 21 participants. The core category which best represented what recovery meant was "reconciling and living with experiences of mental ill-health". Our findings suggest that a variety of societal aspects greatly influence perceptions of mental health recovery in Singapore, as participants often shared their desire to live a meaningful life within society but could only do so if they found a way to manage their symptoms more effectively.

Co-producing principles to guide health research: an illustrative case study from an eating disorder research clinic

BackgroundThere is significant value in co-produced health research, however power-imbalances within research teams can pose a barrier to people with lived experience of an illness determining the direction of research in that area. This is especially true in eating disorder research, where the inclusion of co-production approaches lags other research areas. Appealing to principles or values can serve to ground collaborative working. Despite this, there has not been any prior attempt to co-produce principles to guide the work of a research group and serve as a basis for developing future projects.MethodsThe aim of this piece of work was to co-produce a set of principles to guide the conduct of research within our lived experience led research clinic, and to offer an illustrative case for the value of this as a novel co-production methodology. A lived experience panel were recruited to our eating disorder research group. Through an iterative series of workshops with the members of our research clinic (composed of a lived experience panel, clinicians, and researchers) we developed a set of principles which we agreed were important in ensuring both the direction of our research, and the way in which we wanted to work together.ResultsSix key principles were developed using this process. They were that research should aim to be: 1) real world—offering a clear and concrete benefit to people with eating disorders, 2) tailored—suitable for marginalised groups and people with atypical diagnoses, 3) hopeful—ensuring that hope for recovery was centred in treatment, 4) experiential—privileging the ‘voice’ of people with eating disorders, 5) broad—encompassing non-standard therapeutic treatments and 6) democratic—co-produced by people with lived experience of eating disorders.ConclusionsWe reflect on some of the positives as well as limitations of the process, highlighting the importance of adequate funding for longer-term co-production approaches to be taken, and issues around ensuring representation of minority groups. We hope that other health research groups will see the value in co-producing principles to guide research in their own fields, and will adapt, develop, and refine this novel methodology.

Debate: Better use of existing services, not more new pathways, is required for psychosis prevention in young people - Commentary on Salazar de Pablo and Arango: 'Prevention of psychosis in adolescents: does CAMHS have a role?'

There has been much academic interest in 'the clinical high-risk state for psychosis' (CHR-P) concept. Whilst early intervention in psychosis (EIP) services have offered input to individuals meeting the CHR-P criteria the involvement of CAMHS clinicians in supporting young people with ideational and perceptual disturbance has been more inconsistent and uncertain. We bring together our relevant lived experience, empirical evidence and clinical and research expertise to write this commentary. We assert that the CHR-P paradigm needs to be revised. This should reflect the low transition rates to psychosis and the prevalent general, impairing psychopathology in individuals meeting these criteria. Nevertheless, it is clear that both CAMHS and EIP services have potential roles in meeting the needs of young people affected by distressing ideational and perceptual disturbance. We suggest that new care pathways and services are not required for young people affected by distressing psychosis-like experiences. Rather more effective joint working between CAMHS, EIP, crisis services and other agencies could meet the needs of these young people more comprehensively.

Promoting community engagement in spinal cord injury research: a case example.

Community engagement is an important method of knowledge translation in spinal cord injury (SCI) research where researchers collaborate with people with lived experience, care partners, and other research users to improve the quality of research. This perspective article aims to promote community engagement in SCI research by describing useful resources for its implementation and providing an example project using the North American Spinal Cord Injury Consortium (NASCIC) process for such partnerships. Researchers from the Jefferson College of Rehabilitation Sciences' (JCRS) Center for Outcomes and Measurement engaged NASCIC to create an advisory committee composed of four people living with SCI to make recommendations for the methods of a large-scale study to develop a clinical outcome assessment. The advisory committee made usable recommendations for enhancing recruitment methods and reducing burden and barriers to participation. The successful partnership between NASCIC and JCRS shows the feasibility and value of SCI community engagement in research.

Snacking practices from infancy to adolescence: parental perspectives from longitudinal lived experience research in England.

Consumption of snacks and ultra-processed foods (UPF) high in fat, salt and sugar (HFSS) is associated with rising rates of obesity and growing socioeconomic disparities in nutrition. While infancy, childhood and adolescence are critical periods for development of dietary preferences, there remains a dearth of research exploring factors that underpin snacking behaviour over this time. This review aims to address this gap by drawing from qualitative lived experience research, with 122 families of different socioeconomic position (SEP), to explore how the (i) home food environment, (ii) food environment and (iii) social value and meanings of food shape parental provision of snacks. This review shows that snacking holds important meanings in everyday family life, with infants integrated into existing snacking practices from an early age. Price promotions, low-cost and long shelf-lives all make UPF and HFSS snacks an appealing option for many low-SEP parents; while children's requests and preferences for HFSS snacks present a challenge across SEP. However, higher-SEP parents can ensure fresh fruits are always available as an alternative snack, while fruit is described as a financially risky expenditure for low-SEP families. The present findings also indicate that retailers and producers are increasingly promoting 'healthier' snacks through product packaging and marketing, such as 'meets one of your five a day', despite these products displaying similar nutritional profiles to traditional UPF and HFSS snacks. We outline a series of policy recommendations, including extending Healthy Start Vouchers and the Fruit and Vegetable Scheme in schools and action to address misleading product marketing and packaging.

Introduction to the special section on community-based participatory research (CBPR) and recovery.

Voices of people with lived experience led to a recovery-based revolution in rehabilitation practices and principles. Hence, these same voices must be included as partners in the research enterprise meant to evaluate ongoing developments in this area. Community-based participatory research (CBPR) is the one way to do this. CBPR is not really new to the rehabilitation arena; Rogers and Palmer-Erbs highlighted the paradigm shift in rehabilitation research calling for participatory action research (PAR). PAR is action-oriented and rooted in partnerships between people with lived experience, service providers, and intervention researchers. This special section briefly highlights important topics that highlight the continued need for CBPR in our research enterprise. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Strengthening mental health research outcomes through genuine partnerships with young people with lived or living experience: A pilot evaluation study.

Despite increasing support for stakeholder inclusion in research, there is limited evaluative research to guide safe (i.e., youth-friendly) and meaningful (i.e., non-tokenistic) partnerships with young people with lived experience of mental ill-health in research. This paper describes a pilot evaluation and iterative design of a Youth Lived Experience Working Group (LEWG) protocol that was established by the Youth Mental Health and Technology team at The University of Sydney's Brain and Mind Centre, based on the results of two studies. Study one consisted of a pilot evaluation of the extent to which youth partners felt empowered to contribute, to qualitatively explore how LEWG processes could be improved. Youth partners completed online surveys, and results were shared over two LEWG meetings in 2021 to empower youth partners to collectively identify actions of positive change regarding LEWG processes. These meetings were audio-recorded and transcripts were subsequently coded using thematic analysis. Study two assessed whether LEWG processes and proposed improvements were acceptable and feasible from the perspective of academic researchers via an online survey in 2022. Quantitative and qualitative data collected from nine youth partners and 42 academic researchers uncovered initial learnings regarding facilitators, motivators, and barriers to partnering with young people with lived experience in research. Implementing clear processes for youth partners and academic researchers on effective partnership strategies, providing training opportunities for youth partners to develop research skills, and providing regular updates on how youth partner contributions led to research outcomes were identified as key facilitators. This pilot study provides insight into a growing international field on how to optimise participatory processes so that researchers and young people with lived experience can be better supported and engaged to make meaningful contributions to mental health research. We argue that more transparency is needed around participatory research processes so that partnerships with young people with lived experience are not merely tokenistic. Our study has also been approved by and reflects the concepts and priorities of our youth lived experience partners and lived experience researchers, all of whom are authors of this paper.