Lived Experience Research Articles

Reducing stigma and improving access to care for people with mental health conditions in the community: protocol for a multi-site feasibility intervention study (Indigo-Local)

Abstract Background Stigma and discrimination towards people with mental health conditions by their communities are common worldwide. This can result in a range of negative outcomes for affected persons, including poor access to health care. However, evidence is still patchy from low- and middle-income countries (LMICs) on affordable, community-based interventions to reduce mental health-related stigma and to improve access to mental health care. Methods This study aims to conduct a feasibility (proof-of-principle) pilot study that involves developing, implementing and evaluating a community-based, multi-component, awareness-raising intervention (titled Indigo-Local), designed to reduce stigma and discrimination and to increase referrals of people with mental health conditions for assessment and treatment. It is being piloted in seven sites in five LMICs—China, Ethiopia, India, Nepal and Tunisia—and includes several key components: a stakeholder group workshop; a stepped training programme (using a ‘Training of Trainers’ approach) of community health workers (or similar cadres of workers) and service users that includes repeated supervision and booster sessions; community engagement activities; and a media campaign. Social contact and service user involvement are instrumental to all components. The intervention is being evaluated through a mixed-methods pre-post study design that involves quantitative assessment of stigma outcomes measuring knowledge, attitudes and (discriminatory) behaviour; quantitative evaluation of mental health service utilization rates (optional, where feasible in sites); qualitative exploration of the potential effectiveness and impact of the Indigo-Local intervention; a process evaluation; implementation evaluation; and an evaluation of implementation costs. Discussion The output of this study will be a contextually adapted, evidence-based intervention to reduce mental health-related stigma in local communities in five LMICs to achieve improved access to healthcare. We will have replicable models of how to involve people with lived experience as an integral part of the intervention and will produce knowledge of how intervention content and implementation strategies vary across settings. The intervention and its delivery will be refined to be feasible and ready for larger-scale implementation and evaluation. This study thereby has the potential to make an important contribution to the evidence base on what works to reduce mental health-related stigma and discrimination and improve access to health care.

Assessing the Feasibility and Impact of a Remote Participatory Video Program Aiming to Reduce Stigma Surrounding the Therapeutic Use of Cannabis Among People With Mental Disorders

Evidence suggests that people who use cannabis therapeutically for mental health reasons can experience a double-stigma. This implies the need for educational interventions to shift public attitudes. Thus, we set out to assess the feasibility and impact of a remote participatory video project aiming to reduce associated stigma. We trained a small workgroup with lived experience, who successfully produced three educational documentaries about different aspects of medical cannabis and mental health. Data collected through a survey and focus groups indicated that the videos educated viewers and reduced associated stigma. This suggests that remote participatory video is a promising anti-stigma intervention.

Guidelines for the design and implementation of youth participation initiatives to safeguard mental health and wellbeing.

Worldwide, young people are increasingly engaged in participation and decision-making initiatives regarding issues that affect their lives through advisory groups, representative councils, advocacy and activism. Emerging evidence suggests that these initiatives may have an impact on the mental health and wellbeing of the youth involved. These guidelines, which are based on a scoping review of global evidence and led by a youth advisory group with lived experience of participation initiatives, summarise evidence-based recommendations for designing and implementing youth participation initiatives that protect the mental health and wellbeing of the young people involved. Development of these guidelines followed methods outlined by the Appraisal of Guidelines for Research and Evaluation (AGREE) instrument and the strength of the evidence behind each recommendation was aligned with the National Health and Medical Research Council Levels of Evidence and recommendation grading system. The guidelines include 20 recommendations and three good practice recommendations, addressing the following areas: prioritising clear and respectful communication; creating safe and flexible practices for young people; facilitating social and emotional support; empowering young people to participate in meaningful and impactful ways; and supporting young people to develop skills. These guidelines are expected to provide cross-sectoral, global groups with the confidence to design and implement youth participation initiatives, using the best-available evidence, in ways that safeguard the mental health of the participating young people.

The lasting effect of childhood circus memories: nostalgia and guilt

ABSTRACT Traditional Big Top Circus has experienced a decline in popularity due to changing attitudes to its former elements and to the competition from other accessible forms of entertainment. Our study explores how childhood memories of circus experiences are retold and how these are revisited in the light of changing social values and life experiences. Data was generated through sixteen discussion groups with a total of eighty people over the age of 65 who had experienced circus in their childhood. Thematic analysis found that the circus experience still creates vivid memories decades later. These memories are based around emotions engendered by the sights, sounds and smells of the circus but also the fear of danger and the unknown. Our participants fondly remembered who they were with, highlighting the importance of the relational and social aspects in such leisure experiences. These factors induced a strong sense of nostalgia, but this was tainted by the recognition that what was enjoyed then may no longer be socially acceptable. We conclude that for traditional circus to remain relevant, it needs to harness the strength of nostalgia but separate this from guilt at what circus once included. In a highly competitive live experience, environment circus needs to create heightened sensory experiences (including fear), alongside family togetherness appealing to multiple generations with potentially different values.

The Complex and Marginalized Experiences of BIPOC Trafficked Women: An Examination of Disabilities, ACEs, Discrimination, and Racism

ABSTRACT The purpose of this study was to examine the lived experiences and multiple identities of disabled BIPOC trafficked women. The findings from this study help to identify a carousel of victimization experienced by disabled BIPOC trafficked women, starting with adverse childhood experiences, onto trafficking victimization that differed between Black and White women, and later while seeking services. These findings highlight the need for providers and researchers to think beyond monolithic identities and consider the intersecting ways in which various forms of oppression (ableism and racism) influence the experiences of disabled trafficked BIPOC women.

Adult Educational Cross-Cultural Kids: Identities of Im(mobility) Across Sociolinguistic Spaces

ABSTRACT This article explores the notion of multilingual spaces as sites of (de)legitimization and of the construction of (un)belonging by analyzing the lived experiences of six Hong Kong adult educational cross-cultural kids (AECCK) (i.e., adults who have spent their formative years attending schools founded on and run by a cultural base different from their home or local language), and reports representative narratives from three focal AECCK’s. The study focuses on the way the AECCKs’ identities were constructed as they were positioned as perpetual foreigners across different spaces and times, from the sociolinguistic spaces in which they grew up and the spaces that they encountered abroad. Findings show that even the economically and educationally privileged may also encounter linguistic spaces where they are delegitimized—unequal distribution of power can occur in any multilingual spaces. This study highlights the importance of fostering greater inclusivity in spaces of multilingualism in promoting the wellbeing of all multilinguals.

Feminist participatory action research to co-develop localised health promotion in Indonesia

ABSTRACT Women’s expertise and knowledge can help prevent stunting in impoverished areas with limited resources. Through focus group discussions and photovoice methods, feminist participatory action research (FPAR) explored the perspectives of mothers and community health workers (posyandu) in the development of maternal and community health promotion. Six steps of FPAR were applied: the collection of media on stunting health promotion in public health centres; the building of trust and partnerships with posyandu cadres and mothers; the conducting of focus group discussions with posyandu cadres and mothers of young children to develop local language media through participatory visual methods; the co-designing of media content using online design tools; the dissemination of posters and leaflets to the community through mobile health promotion; and the redevelopment of media content for policy makers. We were able to co-develop effective strategies and solutions for the prevention of stunting that were based on women’s lived experiences.

Purpose in Life and Stress Reactivity.

Individuals with a stronger sense of purpose in life experience better health across the lifespan. This chapter describes one mechanism linking purpose to health, namely stress reactivity. Across survey, experimental, and daily diary studies, research demonstrates that sense of purpose may yield a homeostatic function, insofar that it helps individuals stay the course to progress toward their purpose in life. Future research is needed to examine how self-regulatory capabilities explain why sense of purpose influences reactivity to stressors and daily events.

Dark night of the soul: the lived experience and meaning of mental health crisis

Dark night of the soul: the lived experience and meaning of mental health crisis

School-based support for children bereaved due to parental intimate partner homicide

ABSTRACT Internationally, there is growing recognition of the scale and consequences of intimate partner homicides (IPH). A significant, though often neglected consequence is how many children are impacted by these tragic events. In such challenging circumstances, children need stability, continuity and trusted people they can rely on for support. This paper aims to understand how best to provide school-based support for children following parental IPH by investigating the experiences of affected children, their caregivers and professionals with experience of working with these children. Semi-structured interviews were undertaken with 35 participants in Australia, the UK and Ireland (11 with lived experience, 12 caregivers and 12 professionals). We developed two key themes through the data analysis process: (1) School as a supportive place and (2) Limited access to a trusted, supportive adult at school. We found that schools can potentially be supportive, safe, stable, and consistent places for affected children, and teachers and counsellors can help provide trusted, supportive relationships for them; however, there needs to be effective resourcing within an overall policy structure. Schools are in a strategic position to identify the effects of trauma in the children’s lives and can also provide a valuable link between children and relevant specialist services. There are limitations, however, regarding both the accessibility and availability of suitable skilled and experienced practitioners who can support the children, their caregivers, and school staff. Ongoing care teams need to be established to provide the comprehensive, individualised services these children need.

Development of a habit-based intervention to support healthy eating and physical activity behaviours for pregnant women with overweight or obesity: Healthy Habits in Pregnancy and Beyond (HHIPBe).

The number of women entering pregnancy with overweight or obesity is increasing. This can increase the risk for excessive gestational weight gain (GWG) which is associated with health complications for mother and baby. There are limited evidence-based interventions within antenatal care settings to encourage healthy eating and physical activity behaviours and support women with managing GWG. A previous habit-based intervention 'Ten Top Tips for a Healthy Weight' (10TT) was adapted and made suitable for pregnancy in line with the Medical Research Council's (MRC) complex intervention development guidelines. It involved three key activities: (1) identifying the evidence base; (2) identifying appropriate theory; and, (3) modelling processes. A core element was integrating lived experience via personal and public involvement (PPI). The original 10TTs were adapted with PPI in line with current advice on nutrition and physical activity in pregnancy. New intervention materials were devised, including a leaflet and a logbook and app for self-monitoring to be delivered alongside a brief 1:1 conversation. Behaviour change techniques (BCTs) included in the new materials were coded using a number of behavioural taxonomies. An E-learning resource was created to help standardise the approach to delivery of the intervention and avoid stigmatising conversations. Following MRC guidance for the development of complex interventions alongside significant PPI allowed for the adaption of 10TT habit-based weight management intervention into the 'Healthy Habits in Pregnancy and Beyond' (HHIPBe) intervention. The feasibility and acceptability of implementing this intervention in the antenatal setting will be explored in a feasibility randomised controlled trial. This study was registered on Clinical Trials as 'Healthy Habits in Pregnancy and Beyond (HHIPBe)' ClinicalTrials.gov Identifier: NCT04336878. The study was registered on 07/04/2020.

Hair-ing and haring: post (auto) theoretical more-than-human entanglement with hair/her/stories of Muslim schoolgirls

ABSTRACT In this paper, I use posthumanism and autotheory to materialize the gendered, racialized and sexualized hair/her/stories of British-Muslim schoolgirls in my study. As an act of feminist indiscipline and a feminist transdisciplinary innovative practice, I entangle with those affective, material, embodied and embedded encounters and stories that grow, escape, flow and glow with the vital materiality of hair and her stories. Hair, as one of the transgressive data of my PhD research, emerged in various temporal, spatial and material contexts throughout our research encounters. Considering hair as having posthuman agency, I argue how it can enable different material relations in everyday lived experiences of Muslim schoolgirls with hijab, body, educational environments and practices. Inspired by the notion that theory can do more the closer it gets to the skin what I call Posthumanist autotheory, has emerged from the body-theory encounters. I use posthumanist autotheory to materialize how hair as the ‘auto’ and the more-than-human agency in autotheory grows and becomes matter, method and theory. In using posthumanist autotheory as a feminist transdisciplinary innovative and speculative affirmative approach, this paper hopes to enable knowledge shifts in participatory researching on gendered and racializing assemblages to those everyday ordinary economic, institutional, biological and medical matters and assemblages that constitute racism.

How People With Lived Experiences of Homelessness and Sex Trades Become Social Service Leaders in Sex Trafficking, Sex Trading, and Youth Organizations: A Community-Engaged Study.

Organizations that work with people who trade sex for compensation (including sex work and trafficking) and who are homeless employ lived experience experts to enhance the relevance and utility of services. We sought to understand how lived experience experts become social service leaders and the conditions that influence their pathways and well-being. Influenced by anti-capitalism and anti-white-supremacy, we used an intersectional, community-engaged, constructivist grounded theory approach to conduct semi-structured, in-depth interviews with 26 adults with lived experiences who were currently employed in an organizational leadership role. Participants were ages 22-43; 50% people of color; 26% trans and gender expansive; and 62% queer. We found that lived experience experts were mostly situated either within an individualist or collectivist organizational context. Participants in the individualist context typically began their trajectories through storytelling, which contrasted with those in the collectivist context who began by organizing around a cause or policy. A cycle of internal and external validation (e.g., mentor affirmation and increased self-worth) and invalidation (e.g., insufficient pay; exploitation of their stories; and identity-based exclusion) resulted. Emerging conflicts were perceived and addressed differently depending on participants' contexts, with some additional barriers for those advocating for sex work decriminalization. Findings suggest that there may be insufficient funding structures, mentorship, and leadership development practices and policies to support lived experience experts. Left unaddressed, lived experience experts, especially those who are multiply minoritized, may transition to other roles and/or out of advocacy movements. Anti-capitalist practice, policy, and research implications that counteract harms and support employees' mental health are discussed.

"There's no us vs. them, it's just us": a creative approach to centring lived experience within the AVATAR2 trial.

This article describes a Patient and Public Involvement (PPI) led creative workshop space held within a clinical trial of a talking therapy for distressing voices (AVATAR2). PPI adds significant value to clinical research and ensures the work is meaningful to patients and their supporters. However, known issues include tokenism, a common power imbalance between PPI colleagues and researchers and a lack of opportunity for PPI to shape the research. PPI has played a key role at all stages of the AVATAR2 trial, including design, recruitment of staff and participants, data collection, analysis, and dissemination. An active and creative group of people was established, with over 30 members flexibly involved across all four sites. PPI group members were from diverse backgrounds, with lived experience of mental health conditions and recovery, and including carers. During this work, PPI colleagues identified that they would value a creative space which would help to promote the study but extend beyond an exclusive focus on trial deliverables. A regular creative workshop was established to support PPI colleagues in their creative work, including material such as poetry, blogs, art and podcasts. PPI colleagues and trial staff have cowritten a reflective piece to share their experiences on the impact of the creative workshops, organised into four themes. We found the workshops to be a powerful tool for forging relationships among trial staff and PPI colleagues, while also fostering personal development. We reflected on how the workshops built up the confidence of attendees and supported demanding trial activities such as public speaking. Finally, we discussed the impact of the workshops on wider trial culture, by upholding the values of the team and challenging the status quo.

Understanding coaches’ perspectives on building trust in sport: a narrative inquiry approach

ABSTRACT Quality relationships between coaches and their team members play an important role in promoting individual and team-level outcomes. Trust has been identified as a key feature of these quality relationships, yet little research exists examining how these trusting relationships can be built. By adopting a narrative inquiry approach, we sought to elicit coaches’ stories on their (a) perceived approaches to building trust with team members (i.e. coaching staff, athletes) and (b) life experiences that shaped their approaches. We recruited 18 Canadian interuniversity coaches who engaged in semi-structured interviews which we analysed using a two-phase storyanalyst approach (thematic narrative analysis and holistic-form structural). From these conversations, we found that coaches drew from one of two context-situated narratives with regard to initial trust development: ‘It needs to be given’ and ‘It needs to be earned’. When sharing stories about trust maintenance, however, all coaches drew upon a third context-situated narrative: ‘It needs give and take’. Coaches’ stories were then situated within higher-order narrative types (e.g. performance, stability). Altogether, our findings illuminate the personal and social complexities of building trust from the coach perspective, while reinforcing the importance of developing trusting relationships within sport teams.

How should trial teams make decisions about the proportions and diversity of the ethnic groups in their trial?

The benefits of randomised trials are not shared equally, and people from ethnic minority groups are a key constituency under-served by clinical research and clinical care. The STRIDE project aimed to give trialists practical information about how to decide which ethnic groups should be in their trials, and at what proportion. We considered trials in six clinical areas: cancer, cardiovascular, diabetes, maternal health, mental health, and smoking cessation. We created a summary for each, including participants-intervention-comparators-outcomes, and data on disease prevalence by ethnicity. These were discussed with panels with clinical expertise, trial and methodology expertise, lived experience, funding, and experience of working with and on behalf of ethnic communities. For each trial, we asked panel members to decide which ethnic groups should have been involved and at what proportion. We discussed 23 trials with 40 individual panel members. Panels found our questions difficult to answer. The lack of publicly available data on prevalence by ethnicity was central to this. Where data were available, decision-making was easier but not simple. The discussions led to eight STRIDE recommendations. We recommend that discussions involve diverse teams and that discussions need time, with access to the best available data. In the absence of data or consensus, we recommend the adoption of 'default' minimum rates of inclusion, with oversampling considered. These discussions should inform site selection, and the practical challenges of recruitment and retention should not determine which groups are to be included. We also suggest five policy initiatives to support implementation of the recommendations. Broadly, these are (1) funders need to signal that ethnic diversity is expected, (2) trial teams need access to better data, (3) funders and others need to signal that ethnic diversity means better science, (4) more funding is needed for evaluation, and (5) Good Clinical Practice training should cover ethnic diversity. Agreeing targets for which ethnic groups to involve in a trial is essential but difficult. Our eight recommendations could help to make trials more ethnically diverse if followed, and we suggest five policy initiatives that would create a supportive environment for their implementation.

The Development of Intercultural Competence for Teachers of English as a Foreign Language through an Instructional Design Project

Most teaching pedagogies in English as a Foreign Language (EFL) classes prioritize linguistic skills development over exploring how cultural factors shape language interpretation. To address the gap, this study developed and evaluated an instructional design project using the attention, relevance, confidence, and satisfaction (ARCS) motivational design model combined with critical pedagogy through computer-mediated communication (CMC) tools. The purpose of this research is to enhance EFL teachers’ intercultural competence. Multimedia resources were used to capture participants’ attention, and news articles were selected to connect to their lived experiences. Online forums were used to build their confidence, and intercultural activities provided satisfaction through practical engagement. Critical literacy pedagogy guided the design of questions to encourage EFL teachers to explore assumptions, challenge perspectives, and critically analyze language. Data from 16 EFL teachers’ questionnaires, online comments, and interviews indicated that task attractiveness and the online environment motivated EFL teachers to develop critical literacy skills. Future studies could explore additional strategies for integrating intercultural competence into EFL teaching and examine how cultural dynamics within groups influence online communication.

Learning from the best: How medical-students construct role models in general practice during the COVID-19 pandemic and what factors influence this process, a qualitative study.

Background Role-modelling has been found to strongly influence speciality choice for medical students either positively or negatively. There is a deficit in recruitment toward general practice, set to exacerbate the shortfall in GP numbers over the coming decade in the face of spiralling demand. In medical school, students acquire knowledge, skills and start to form their professional identity by observation and interaction with medical educators through the process of role-modelling. Given the significance of this process, the present study attempted to explore the “lived experience” of medical students encountering potential role models during their GP placement using a qualitative method. Methods Following a design based upon the principles of Grounded Theory 10 qualitative interviews were conducted with third-year medical student volunteers at Warwick Medical School. Interviews were recorded, transcribed and analysed using theoretical axial coding demonstrating data saturation in key themes. Results Analysis of data gave insights regarding student perception of positive and negative role modelling in three corresponding domains: Personal Attributes, Student Relationship and Patient Relationships. Conclusions The findings offer unique insights into the influence and impact of GP role-modelling on medical student’s experiences and perceptions during a time of the Covid-19 pandemic and the immediate post-pandemic period and add to the wider body of literature by exploring the influences GP role-modelling has on medical student training experience. The findings support easily implementable recommendations to strengthen positive role modelling in the GP medical student placement context.

Navigating the Limits of Diagnosis: Young Adults' Experiences of Chronic Living.

Young adults living with chronic illness often experience considerable uncertainty across the emotional, cultural and medical spheres of their everyday lives. The process of seeking, receiving and reckoning with a diagnosis has frequently been an in-road for qualitative examinations of these experiences. As a result, the biomedical diagnosis has often taken centre stage in research concerning how uncertainty is managed and/or more stability is found. However, the significance of diagnosis can shift over time, and in many cases, the promise of diagnosis deteriorates as life unfolds. This study draws on a series of in-depth qualitative interviews with 33 young adults (ages 19-29) living with a range of chronic illnesses, which include auto-immune illnesses, fatigue syndromes and neurological conditions. Undertaking an inductive interpretative analysis based on constructivist grounded theory, we examine the role and meaning of diagnosis for our participants and find that they iteratively de-centre diagnosis in various circumstances. We suggest that while the way young adults manage chronic illness may involve seeking a diagnosis, navigating the shortcomings of diagnosis takes a significant emotional toll, and a failure to recognise this work is one important way that the experience of chronic illness when young can be misunderstood.

Oncology Camp Participation and Psychosocial Health in Children Who Have Lived with Cancer—A Pilot Study

Children with lived cancer experience encounter adversity, therefore experiences promoting psychosocial health are necessary. This pilot study determined the impact of recreational oncology camps (ROC) on resilience, hope, social support, and mental well-being in youth who have lived with cancer. Youth (6–18 years) with cancer experience enrolled in an 11-day session of ROC (Muskoka, Ontario, Canada) were invited to participate. Participants completed a survey [Children’s Hope Scale (CHS), Child and Youth Resilience Measure (CYRM-R), Social Provisions Scale (SPS-5), and Short Warwick–Edinburgh Mental Wellbeing Scale (SWEMWBS)] on the first (T1) and last day (T2) of camp, and 3 months post-camp (T3). Repeated-measures ANOVAs evaluated differences in survey scores among time points. Ten participants (14.1 ± 2.5 years) were included in the analysis. CHS scores at T3 were lower than T1 and T2 (F = 9.388, p = 0.008). CYRM-R, SPS-5, and SWEMWBS scores were high but did not differ between time points. Hope decreased 3 months post-camp, suggesting a need for continued psychosocial support. Overall, the ROC environment is associated with positive psychosocial health.