Lived Experience Research Articles

The real life experience goes on: update after 4 years on the first cohort treated with lanadelumab at our center

IntroductionLanadelumab is a first-line long-term prophylaxis (LTP) in hereditary angioedema (HAE). Real-life data on its long-term efficacy and safety are limited. It is unknown whether patients using lanadelumab need short-term prophylaxis (STP).ObjectivesTo provide 4-year follow-up data for our first 34 patients treating with lanadelumab.MethodsPatients were assessed for their current injection interval, attacks, treatment satisfaction, disease control (AECT), quality of life impairment (AE-QoL), events that can induce attacks, and the use of STP since the start of their treatment with lanadelumab.ResultsOf 34 patients who started lanadelumab treatment, 32 were still using it after 4 years, with a median injection interval of 33 (range 14-90) days. HAE patients (n=28) reported longer intervals, i.e. 35 (14-90) days, than patients with angioedema due to acquired C1 inhibitor deficiency (n=4, 23 (14-31) days). With their current injection intervals, used for a mean duration of 29 ± 17 months, patients reported a yearly attack rate of 0.3 ± 0.1. More than 70% of patients were attack-free since starting their current injection interval. All patients reported well-controlled disease, i.e. ≥10 points in the AECT; 21 patients had complete control (16 points). AE-QoL scores improved further compared to our initial report, most prominently in the fears/shame domain (-6 points). Treatment satisfaction was very high. No angioedema occurred after 146 of 147 potentially attack-inducing medical procedures without STP.ConclusionsOur results demonstrate the long-term efficacy and safety of lanadelumab in real-life and question the need for STP in patients who use effective LTP.

‘The general concept is a safer use approach’: how image and performance enhancing drug coaches negotiate safety through community care

Background Drug coaches are a novel extension of traditional personal trainers who play a significant role providing support and shaping drug-related behaviours for people who use image and performance enhancing drugs (IPEDs). They constitute a critical domain for everyday risk management, where substance use, and its associated harms are influenced by social exchange. This study investigated how IPED coaches negotiate safety within the community through the provision of their services and the partnerships they form with clients. Method Ten IPED coaches, selected through purposive sampling, engaged in semi-structured interviews (32–57 minutes in length) exploring the way in which they operate in their field of practice. Iterative inductive analysis was applied to the transcripts, enhanced by discussions among researchers and an independent coder. Results The findings are organised under three categories, revealing the nuanced strategies and identities of IPED coaches, emphasising harm reduction and optimising ‘gains’ in IPED use. These coaches play a significant role in harm reduction, wielding their ‘chemical capital’ and lived experience to integrate nuanced harm reduction strategies into their partnerships with clients. Conclusion Embodying a model of peer-driven knowledge exchange and emphasising open and inclusive discourse IPED coaches offer a vehicle toward integrated harm reduction strategies.

“Are you supposed to be here?”: Formerly incarcerated men of color navigating positions of authority

AbstractThe current study sought to understand the lived experiences of 10 formerly incarcerated Black and Latino men in an apprentice program for physical trainers using directed content analysis. Participants described a variety of microaggressions, including those representing known themes (e.g., assumption of criminality) and new (sub)themes (e.g., borrowed legitimacy). They also described new opportunities afforded to them by virtue of their involvement in the apprentice program and their newly found authority. Results indicate that formerly incarcerated men of color experience daily discrimination and re‐entry challenges that may be destabilizing and contribute to recidivism, thus reinforcing the cycle of mass incarceration. The authors suggest further investment in tertiary interventions to buffer against the harmful effects of microaggressions, as well as further research with a critical race lens and primary interventions aimed at ameliorating the societal conditions that lead men of color to come into contact with the criminal legal system.

Understanding weight management in adult secure mental health services: findings from a mixed-methods study in Northern England

Purpose Obesity and associated morbidity and mortality are major challenges for people with severe mental illness, particularly in secure (forensic) mental health care (patients who have committed a crime or have threatening behaviour). This study aims to explore experiences of weight management in secure mental health settings. Design/methodology/approach This study used a mixed-methods approach, involving thematic analysis. A survey was delivered to secure mental health-care staff in a National Health Service (NHS) mental health trust in Northern England. Focus groups were conducted with current and former patients, carers and staff in the same trust and semi-structured interviews were undertaken with staff in a second NHS mental health trust. Findings The survey received 79 responses and nine focus groups and 11 interviews were undertaken. Two overarching topics were identified: the contrasting perspectives expressed by different stakeholder groups, and the importance of a whole system approach. In addition, seven themes were highlighted, namely: medication, sedentary behaviour, patient motivation, catered food and alternatives, role of staff, and service delivery. Practical implications Secure care delivers a potentially “obesogenic environment", conducive to excessive weight gain. In future, complex interventions engaging wide-ranging stakeholders are likely to be needed, with linked longitudinal studies to evaluate feasibility and impact. Originality/value To the best of the authors’ knowledge, this is the first study to involve current patients, former patients, carers and multidisciplinary staff across two large NHS trusts, in a mixed-methods approach investigating weight management in secure mental health services. People with lived experience of secure services are under-represented in research and their contribution is therefore of particular importance.

Curating Community behind Barbed Wire: Canadian Prisoner of War Art from the Second World War

Though often under-represented in the official and national narratives and in Canadian military historiography more broadly, the intimate and personal lived experiences of Canadian prisoners of war (POW) during the Second World War can be found in archives, photography collections, and collections of war art. In an attempt to see past the mythologised versions of POWs that appear in Hollywood films, best-selling monographs, and other forms of popular culture, it is through bits of ephemera—including wartime log books and the drawings carefully kept and sent home to loved ones along with handwritten letters—that the stories of non-combatant men and women who spent their war as POWs, can be told. Together, Canadian POWs created and curated community and fostered unconventional family ties, sometimes called “emotional communities”, through the collection and accumulation of drawings, illustrations, paintings, and other examples of war art on the pages of their wartime log books while living behind barbed wire. This article uncovers some of these stories, buried in the thousands of boxes in the George Metcalf Archival Collection—the textual archives—at the Canadian War Museum (CWM) in Ottawa, Ontario, Canada.

The lived experience of mental disorders in adolescents: a bottom-up review co-designed, co-conducted and co-written by experts by experience and academics.

We provide here the first bottom-up review of the lived experience of mental disorders in adolescents co-designed, co-conducted and co-written by experts by experience and academics. We screened first-person accounts within and outside the medical field, and discussed them in collaborative workshops involvingnumerous experts by experience - representing different genders, ethnic and cultural backgrounds, and continents - and their family members and carers. Subsequently, the material was enriched by phenomenologically informed perspectives and shared with all collaborators. The inner subjective experience of adolescents is described for mood disorders, psychotic disorders, attention-deficit/hyperactivity disorder, autism spectrum disorders, anxiety disorders, eating disorders, externalizing disorders, and self-harm behaviors. The recollection of individuals' past histories also indexes the prodromal (often transdiagnostic) features predating the psychiatric diagnosis. The experience of adolescents with mental disorders in the wider society is described with respect to their family, their school and peers, and the social and cultural context. Furthermore, their lived experience of mental health care is described with respect to receiving a diagnosis of mental disorder, accessing mental health support, receiving psychopharmacological treatment, receiving psychotherapy, experiencing peer support and mental health activism, and achieving recovery. These findings can impact clinical practice, research, and the whole society. We hope that this co-designed, co-conducted and co-written journey can help us maintain our commitment to protecting adolescents' fragile mental health, and can help them develop into a healthy, fulfilling and contributing adult life.

Building the Environment for Narrative Inquiry With Young People With Intellectual Disability

Narrative inquiry methods are central to qualitative research that seeks to understand phenomena through the lived experiences of research participants. This research used a form of narrative inquiry—storytelling, to invite four young people with intellectual disability referred to as the “story owners” to share their stories about sexuality and relationships. Through a reflexive approach, this article unpacks the relational and physical contexts that surrounded the narrative inquiry methods, which the researchers describe as the narrative environment. In this narrative environment, each story owner co-developed their story with an academic researcher. The research found that the key components of the narrative environment which were co-created somewhat differently by each story owner were space and place, objects, people, and relationships and communication. Take home messages provided in this research can assist novice researchers and co-researchers in their methodological approach to narrative research with people with intellectual disability.

From Aristocrat to Religionist: Kyai Pati and Islamic Renaissance in 16th-Century Semarang

Semarang is a city with a sizeable Muslim population in Central Java Province, Indonesia. In 2022, the Muslim population in Semarang will reach 87.38%, and this indicates that the role of the Muslim community in various areas of life cannot be underestimated. Reading the history of Islamization in Semarang, a unique name will emerge: Wasis Jaya Kusuma, known as Kyai Pati; this figure is a symbol of concrete identity change in the life of traditional Javanese society in the 16th century. This change occurred because of his bitter life experience, being defeated in the war against the Islamic Mataram Kingdom under the leadership of Panembahan Senopati. Finally, he changed from being a nobleman to becoming a religionist who devoted himself to the people of the South Semarang area. This life story is a humanitarian phenomenon that is important to reflect from a global perspective that war can change a person's identity. Advantage or disadvantage, this change in identity has placed someone like Kyai Pati in a respected position; through the path of Syiar, he has become an essential part of the history of Islamization in Semarang.

Exploring cultural dynamics of Black Asian Minority Ethnic (BAME) women in addiction recovery: a comparison of three women from different ethnic backgrounds

Background The existing recovery capital (RC) literature primarily focuses on white males. This study aims to fill this gap by exploring addiction recovery among three culturally diverse UK women, utilizing CHIME-D (Connectedness, Hope/Optimism, Identity, Meaning, Empowerment, and Difficulties) and RC frameworks. It seeks to compare their recovery paths, combining quantitative data with lived experiences, and barriers specific to women in recovery. Methods The article will deploy a case study design involving a mixed methods approach to explore recovery pathways and resulting RC, based on in-depth interviews and recovery capital assessments with three women from white, black and Asian ethnic backgrounds. Results While one of the three participants, reports very strong and positive RC on the REC-CAP, the other two are at a much earlier stage in their journey. In contrast to the white female participant, who lacks personal RC and has significant barriers around ongoing substance use, the Black and Asian Minority Ethnic (BAME) participants report cultural challenges and difficulties engaging with mainstream services. Conclusion Recovery is a personal and individualized journey, but one that is predicated on social support, belonging and access to cultural and community resources. For BAME participants, accessing and engaging with appropriate peer support is essential in building RC and fulfilling the requirements of CHIME.

Transportation Experiences of College Students With Intellectual and Developmental Disabilities: A Photovoice Study

Transition-age adults with disabilities largely desire the same community employment and community participation outcomes as young adults without disabilities. One common barrier to the manifestation of these desires is the lack of reliable and accessible transportation in their communities. This study used the participatory action research method of photovoice to investigate the experiences of college students with intellectual and developmental disabilities (IDDs) accessing various transportation options within their community. Utilizing a critical constructivist theoretical framework, researchers worked with participants to co-construct situated knowledge. The overall aim of this study was to contribute to the extant literature on transportation barriers and facilitators for this population and to give emerging adults enrolled in an inclusive postsecondary education program an opportunity to share their lived experiences and raise critical consciousness related to their transportation experiences. Limitations and implications for future research, and practice are included.

'I'm still su!c!dal when you're done with the paperwork': an inductive framework thematic analysis of #camhs on TikTok.

Young people are sharing their experiences of Child and Adolescent Mental Health Services (CAMHS) in the United Kingdom on TikTok. Little is known about the content of these videos and their influence on young people's attitudes towards seeking professional mental health support. This study explored how CAMHS is represented in a sample of 100 #camhs TikTok videos using participatory inductive framework thematic analysis. Four themes were developed alongside young people as co-researchers: (a) CAMHS can be frustrating and unhelpful, but sometimes life-saving, (b) Young people can feel their distress is invalidated by CAMHS, (c) CAMHS makes young people feel responsible for their distress, and (d) Young people may not feel CAMHS professionals are trustworthy. Video content described dismissive responses to expressions of suicidal ideation, professional knowledge being privileged over lived experience, and breaches of confidentiality. Some shared positive experiences of CAMHS helping to keep them safe. Together, the themes reflect a representation of CAMHS as a service where adults are powerful and young people occupy a subjugated position. This may influence young people's professional help-seeking behaviour. Recommendations for clinical practice and future research are presented.

Studying the context of psychoses to improve outcomes in Ethiopia (SCOPE): Protocol paper

Background Global evidence on psychosis is dominated by studies conducted in Western, high-income countries. The objectives of the Study of Context Of Psychoses to improve outcomes in Ethiopia (SCOPE) are (1) to generate rigorous evidence of psychosis experience, epidemiology and impacts in Ethiopia that will illuminate aetiological understanding and (2) inform development and testing of interventions for earlier identification and improved first contact care that are scalable, inclusive of difficult-to-reach populations and optimise recovery. Methods The setting is sub-cities of Addis Ababa and rural districts in south-central Ethiopia covering 1.1 million people and including rural, urban and homeless populations. SCOPE comprises (1) formative work to understand care pathways and community resources (resource mapping); examine family context and communication (ethnography); develop valid measures of family communication and personal recovery; and establish platforms for community engagement and involvement of people with lived experience; (2a) a population-based incidence study, (2b) a case-control study and (2c) a cohort study with 12 months follow-up involving 440 people with psychosis (390 rural/Addis Ababa; 50 who are homeless), 390 relatives and 390 controls. We will test hypotheses about incidence rates in rural vs. urban populations and men vs. women; potential aetiological role of khat (a commonly chewed plant with amphetamine-like properties) and traumatic exposures in psychosis; determine profiles of needs at first contact and predictors of outcome; (3) participatory workshops to develop programme theory and inform co-development of interventions, and (4) evaluation of the impact of early identification strategies on engagement with care (interrupted time series study). Findings will inform development of (5) a protocol for (5a) a feasibility cluster randomised controlled trial of interventions for people with recent-onset psychosis in rural settings and (5b) two uncontrolled pilot studies to test acceptability, feasibility of co-developed interventions in urban and homeless populations.

Feeling a little uneasy: A comparative discourse analysis of White and BIPOC college students’ reflective writing about systemic racism

AbstractThis critical discourse analysis compares the ways in which White and BIPOC college students discuss their experiences of an educational intervention meant to promote better understanding of systemic racism. We analyzed reflective writing produced by 11 White psychology students from a private liberal arts college in the eastern United States and 17 BIPOC students from a Human Services program at a public university in the western United States. White students engaged in whiteness discourse that distanced themselves from the realities of systemic racism and/or relieved the cognitive dissonance associated with the self‐ and group‐image threat related to learning about systemic racism. In so doing, they unwittingly upheld white supremacy. BIPOC students, in contrast, engaged an antiracist discourse that employed critiques of the social systems that produce systemic racism and destabilized dominant colorblind narratives, often by drawing on lived experience. From the Critical Race Theory perspective that the centrality of lived experience is a legitimate lens through which to analyze racial subordination, we discuss the importance of attending to the action orientation and constructed nature of discourse in antiracist education.

The patient's perspective on participation in a multidisciplinary team meeting: A phenomenological study.

In mental health care settings, inpatients are increasingly engaged in their care process, allowing them to participate in multidisciplinary team meetings. Research into how mental health patients (MHPs) experience participating in such meetings is, however, limited. This study aimed to explore inpatients' experiences when participating in multidisciplinary team meetings in a Belgian inpatient mental health unit. This study used a phenomenological design with data collection including semistructured interviews. Twelve individuals participated in the study. Participants were MHPs admitted to a mental health unit that works according to the model of recovery-oriented mental health practice. Findings were analysed utilising thematic analysis. Results showed that the MHPs' experiences were mainly positive but intense. Themes included: 'Feeling honoured to be invited', 'Sense of obligation', 'Feeling nervous', 'Transparency in team members' insights', 'Feeling supported by the (primary) nurse' and 'Duality about the presence of relatives'. By taking these findings into account, (mental) healthcare workers gain insight into the patient's lived experiences, allowing them to provide more person-centred care when inpatients participate in multidisciplinary team meetings. Moreover, these findings can support mental health units in implementing or optimising patient participation in multidisciplinary team meetings. Finally, other (mental health) patients can also benefit from these findings as it can help them to put feelings and thoughts into perspective when participating in a multidisciplinary team meeting during a hospital admittance.

Family language policy in a transnational family living in Finland: multilingual repertoire, language practices, and child agency

Each multilingual transnational family is unique and thus deserves to be carefully studied in terms of its family language policy (FLP). Speaker-centered approaches can provide a deeper understanding of linguistic diversity in a multilingual setting. The studied Russian-Italian family is raising a multilingual boy (8:2) in Finland. The multilingual repertoire includes Russian, Italian, Finnish, English, and Hebrew. In this case-study, an ethnographic approach is used to explore the multilingual family repertoire by presenting their lived experiences and language practices. I discuss the FLP and child’s active role in shaping the family’s linguistic practices (child agency). The following methods were combined: semi-structured interviews, language background surveys, written diary entries, self-recordings of interactions in the family, and a language portrait that depicts the child’s multilingual repertoire. The interviews and other recordings were transcribed manually. The following research questions guided the study: (1) How do the family members describe their FLP? (2) How does the FLP evolve through everyday interactions (language practices)? (3) How does the child exercise his agency in the family setting? The results reveal that the family’s language practices follow predominantly an one person-one language (OPOL) strategy; consequently, the child speaks a different language with each parent. However, the analysis of the language ideologies reveals positive attitudes toward both multilingualism and all the languages in the family’s repertoire, which explains the multilingual practices having multiplicity and unexpectedness. FLP is shaping the family language practices. Evidence of language hierarchy can be explained by a number of family-external and family-internal social factors.

The Development of Casta Painting as Visual Genre in New Spain and the Production of Ethnoracial Stereotypes

The aim of this essay is to analyze the ways in which the development of the casta pictorial genre contributed to the production and stabilization of racializing and racist stereotypes. These racial stereotypes still persist in cultural imaginaries in and about Latin America as part of the long duration of coloniality. Casta painting from New Spain is analyzed here as a pictorial genre and as a colonial discourse in connection with situated social and racial concepts, such as Creole, caste, and calidad. The analysis develops through a dialogue with perspectives from Semiology of Art, Visual studies, Postcolonial studies, and Latin American Critique of Coloniality. In this regard, this essay intends to create a conversation among different disciplines and fields of study in order to develop a complex, transdisciplinary approach to a problem from colonial times: the production and circulation of ethnoracial stereotypes and their impact on social relations, lived experiences, and subjectivities.

‘Getting addicted to it and losing a lot of money… it’s just like a hole.’ A grounded theory model of how social determinants shape adolescents’ choices to not gamble

BackgroundGambling abstinence when underage lowers the risk of harmful gambling in later life. However, little research has examined why many young people refrain from gambling, even though this knowledge can inform protective strategies and lower risk factors to reduce underage gambling and subsequent harm. This study draws on the lived experience of adolescent non-gamblers to explore how social determinants while growing up have shaped their reasons and choices to not gamble.MethodsFourteen Australian non-gamblers, aged 12–17 years, participated in an in-depth individual interview (4 girls, 3 boys) or online community (4 girls, 3 boys). Questions in each condition differed, but both explored participants’ gambling-related experiences while growing up, including exposure, attitudes and behaviours of parents and peers, advertising, simulated gambling and motivations for not gambling. The analysis used adaptive grounded theory methods.ResultsThe grounded theory model identifies several reasons for not gambling, including not being interested, being below the legal gambling age, discouragement from parent and peers, concern about gambling addiction and harm, not wanting to risk money on a low chance of winning, and moral objections. These reasons were underpinned by several social determinants, including individual, parental, peer and environmental factors that can interact to deter young people from underage gambling. Key protective factors were parental role modelling and guidance, friendship groups who avoided gambling, critical thinking, rational gambling beliefs, financial literacy and having other hobbies and interests.ConclusionsChoices to not gamble emanated from multiple layers of influence, implying that multi-layered interventions, aligned with a public health response, are needed to deter underage gambling. At the environmental level, better age-gating for monetary and simulated gambling, countering cultural pressures, and less exposure to promotional gambling messages, may assist young people to resist these influences. Interventions that support parents to provide appropriate role modelling and guidance for their children are also important. Youth education could include cautionary tales from people with lived experience of gambling harm, and education to increase young people’s financial literacy, ability to recognise marketing tactics, awareness of the risks and harms of gambling, and how to resist peer and other normalising gambling influences.

Choosing Life in All Its Fullness: The Nature of the Abundant Life and Its Relationship to Abortion Politics

In John 10:7-10, Jesus promises that he has come so that we may have life in all its fullness. This article examines life in its fullness from an Anglican perspective, articulating a Christian ethic that asserts freedom, voice, identity, and an opportunity to flourish are essential components to such a life. Life experiences illuminate ways in which the choice about whether or not to terminate a pregnancy helped define full life for both mothers and children. These insights grow out of experiences working in a teenage parent program in Florida and as the director of a family planning clinic in the rural west. The premise of the article is that both scripture and our Anglican tradition imagine life to mean more than just subsistence, and that current prohibitions on abortion, even before fetus viability, thwart Christ’s vision for life, most poignantly for women and children in poor and rural settings.

Lived experiences of matrilocal husbands in Filipino marriage patterns: a phenomenological inquiry

Marriage exists to bring a man and a woman together as husband and wife. Hence, determining a community's rules or rules of residence in marriage has long been established as an essential requirement in understanding the social system. Moreover, in-residence practices are the first family pattern to exhibit change and cause subsequent change; thus, they warrant attention. Meanwhile, when couples marry, they usually live in or near the home of the man's parents. However, sometimes, this wasn't practiced because of the preeminence of the bride's family. Hence, unlike the more common patrilocal marriage, the groom resides with the bride's parents. A phenomenological qualitative study was utilized to understand the lived experiences of matrilocal husbands in Filipino marriage patterns. The researcher identified four major themes from the transcripts using Colaizzi's phenomenological data analysis procedure. Reasons for becoming a matrilocal husband are primarily based on the socioeconomic status of the couple. The participants expressed that there were moments of self-adjustment and set-aside decisions. They expressed a need to socialize, particularly with his in-laws. This study can be used for policy-making, specifically for the local government unit, to extend activities to cater to the personal, social, and psychological impacts of being a matrilocal husband. It can also be integrated into gender and society courses in college.

Providing Guidance and Counseling Services in Time of Covid-19 Pandemic: Lived Experiences of Guidance Designates

The pandemic era has directed a new facade of education from traditional to a more conducive system of virtual and modular schemes. The Guidance Designates are equally tasked to play a crucial part in this abrupt transition as the teachers. They, too, are directed to maintain relationships on top of the delivery of guidance and counseling services at the height of the COVID-19 pandemic to meet the needs of students and families and let the education roll. This descriptive phenomenological study was conducted to explore the lived experiences of public junior high school guidance designates in the delivery of guidance and counseling services during the pandemic. The participants of this study were five guidance designates in public junior high schools identified using purposive sampling who took part in the unstructured in-depth interview. The study revealed that guidance designates faced issues, struggles, and sentiments in the delivery of guidance services during the time of pandemic. They utilized various alternatives for the delivery of appropriate services to clients despite unreachable ones. Despite their feelings of boredom and loneliness, they found meaning in their chosen profession by becoming grateful for the designation, and their commitment to serving the clients ignited the passion to go on despite the odds. Their enjoyment with colleagues acts as their strong social support during the crucial times of the pandemic. Thus, these experiences honed them to be shade shifters that remained resilient and flexible in the delivery of guidance and counseling services in the pandemic era.