Lived Experience Research Articles

Exploring the experience of working relationships for support workers of adults with intellectual disabilities.

Research suggests that a better awareness of how staff who directly support people with intellectual disabilities experience their working relationships, will contribute to understanding staff wellbeing and the quality of care they offer. This study aimed to gain insights into the lived experiences of support workers in supported living services in England. Six support workers participated in semi-structured interviews, about their working relationships with service-users and colleagues. Data was analysed using interpretative phenomenological analysis. Six interconnected themes emerged: The essence of good relationships; a trusting relationship as the vehicle for meeting service-users' needs; belonging to the support team; the organisational context of relationships; the social context of relationships; 'a fine balancing act'. The findings provide insights into staff wellbeing, indicating that developing supportive, trusting relationships with both service-users and colleagues, plays an important role in delivering effective care. Potential implications for service providers are discussed.

Better conversations with Parkinson’s: co-production of a novel speech and language therapy intervention with people living with Parkinson’s

Effective engagement with stakeholders is key in health-care research and intervention development. There is currently a lack of evidence relating to the involvement of co-producers with Parkinson’s-related communication difficulties. This article provides a critical reflection on co-producing a novel speech and language therapy intervention (Better Conversations with Parkinson’s) with people living with Parkinson’s who have an interest in, or lived experience of, communication difficulties. Evaluation is based on qualitative comments and survey responses from patient and public involvement group members, documentation and outputs from the patient and public involvement group, and reflection using the Public Involvement Impact Assessment Framework. The co-production group, research team and organisation highly valued the expertise and collaboration as equal partners gained through co-production. Key enablers included skilled facilitation and adequate time and funding. Consideration should be given to the format of participation (online or face-to-face), recruitment strategies and the role of patient and public involvement, in order to improve access to underserved groups and strengthen the voice of public and patient involvement members. Co-production with people living with Parkinson’s and communication difficulties allowed the creation of a more credible, relevant intervention which responds to the needs of key stakeholders, and it was a positive experience with personal benefits for those involved. We propose offering a flexible choice of co-production methods to accommodate the differing experiences of patient and public involvement members with Parkinson’s and communication difficulties.

Narrative Inquiry Describing Young Adult Perspectives About Leaving Residential Treatment as a Child

ABSTRACT Empirical research exploring treatment outcomes among children in residential treatment centers (RTCs) is rare. Consequentially, there is an increasing demand for more studies examining such outcomes, particularly as they pertain to an individual’s experience leaving an RTC. This transitional period is believed to be a salient component impacting mental health treatment outcomes. Yet, little is known about how this residential treatment component is experienced and whether it impacts individuals long-term. This narrative qualitative study aimed to understand the experience of young adults who transitioned out of an RTC as a child. Participants recounted their experiences before, during, and after this transition. Six participants who resided in an RTC as a child for at least six consecutive months recounted their life experiences, producing 26 hours of interview data. Data were transcribed, coded, and written in narrative and thematic form. Our analysis produced three themes: learned and used effective coping skills, developed impactful relationships, and difficult adjustment post-discharge.

Recommendations for clinical trial design in acute kidney injury from the 31st acute disease quality initiative consensus conference. A consensus statement.

Novel interventions for the prevention or treatment of acute kidney injury (AKI) are currently lacking. To facilitate the evaluation and adoption of new treatments, the use of the most appropriate design and endpoints for clinical trials in AKI is critical and yet there is little consensus regarding these issues. We aimed to develop recommendations on endpoints and trial design for studies of AKI prevention and treatment interventions based on existing data and expert consensus. At the 31st Acute Disease Quality Initiative (ADQI) meeting, international experts in critical care, nephrology, involving adults and pediatrics, biostatistics and people with lived experience (PWLE) were assembled. We focused on four main areas: (1) patient enrichment strategies, (2) prevention and attenuation studies, (3) treatment studies, and (4) innovative trial designs of studies other than traditional (parallel arm or cluster) randomized controlled trials. Using a modified Delphi process, recommendations and consensus statements were developed based on existing data, with > 90% agreement among panel members required for final adoption. The panel developed 12 consensus statements for clinical trial endpoints, application of enrichment strategies where appropriate, and inclusion of PWLE to inform trial designs. Innovative trial designs were also considered. The current lack of specific therapy for prevention or treatment of AKI demands refinement of future clinical trial design. Here we report the consensus findings of the 31st ADQI group meeting which has attempted to address these issues including the use of predictive and prognostic enrichment strategies to enable appropriate patient selection.

Early childhood risk factors for later onset of pediatric chronic pain: a multi-method longitudinal study

BackgroundPediatric chronic pain (i.e., pain lasting ≥ 3 months) is prevalent, disabling, and costly. It spikes in adolescence, interrupts psychosocial development and functioning, and often co-occurs with mental health problems. Chronic pain often begins spontaneously without prior injuries and/or other disorders. Prospective longitudinal cohort studies following children from early childhood, prior to chronic pain onset, are needed to examine contributing factors, such as early pain experiences and mental health. Using data from a longitudinal community pregnancy cohort (All Our Families; AOF), the present study examined the associations between early developmental risk factors, including early childhood pain experiences and mental health symptoms, and the onset of pediatric chronic pain at ages 8 and 11 years.MethodsAvailable longitudinal AOF data from child age 4 months, as well as 1, 2, 3, 5, 8, and 11 years, were used. Mothers reported their child’s pain experiences (e.g., hospitalizations, vaccinations, gut problems) at each timepoint from 4 months to 8 years, child chronic pain at age 8, and child mental health symptoms at ages 5 and 8 years. Children reported their chronic pain frequency and interference at age 11. Adaptive least absolute shrinkage and selection operator (LASSO) regressions were used to select predictor variables. Complete case analyses were complemented by multiple imputation using chained equation (MICE) models.ResultsGut problems, emergency room visits, frequent pain complaints, and headaches at age 5 or earlier, as well as female sex, were associated with increased risk of maternal reported child chronic pain at age 8. Maternal reported chronic pain at age 8 was associated with higher levels of child-reported pain frequency and pain interferences at age 11. Boys self-reported lower levels of pain interference at age 11.ConclusionsSome, but not all, painful experiences (e.g., gut problems, ER visits, pain complaints) in early life contribute to pediatric chronic pain onset and should be considered for screening and early intervention.

Colonial shadows: Exploring coloniality of being among Puerto Rican immigrants in the United States.

Coloniality, or the enduring legacy of domination and White supremacy stemming from colonization, manifests across power dynamics, knowledge systems, and personal identity. This study investigated the coloniality of being of 12 Puerto Rican adults living in the United States. We explored their perceptions of the self, other Puerto Ricans, Puerto Rican cultural patterns, and self-aspirations. Using consensual qualitative research, six domains emerged from the data, including (a) self-identity, (b) Puerto Rican pride, (c) other Puerto Ricans, (d) Puerto Rican dependency, (e) Puerto Ricans and work, and (f) reasons for migrating or staying in Puerto Rico. Results portrayed colonial power dynamics' profound and complicated mark on different aspects of the participants' individual and collective selves. Participants' language and narratives also conveyed ruptures between participants and other Puerto Ricans. Findings from our study help expand our understanding of Puerto Ricans' lived experiences of colonization, a group that still experiences the occupation and domination of its land and people. Our article also discusses the clinical and theoretical implications of this work, particularly as it pertains to Puerto Rican identity formation. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

"It would Never have Happened Without the Pandemic": Understanding the Lived Experience of Individuals who Increased Their Online Gambling Participation.

The gambling landscape was profoundly impacted by the COVID-19 pandemic, leading to an increase in online gambling participation. This growth raises concerns about the potential harms associated with online gambling. This qualitative study aims to understand the lived experiences of gamblers whose participation in online gambling increased due to the pandemic. Thematic content analysis was undertaken based on semi-structured interviews conducted with 58 people who reported an increase in their online gambling participation due to the pandemic. Findings are presented according to the three main themes that emerged from the analyses: (1) whether increases in gambling participation during the pandemic were short-term or sustained, (2) characteristics of the gambling environment and operators' practices that shaped this increase, and (3) the role of gambling in the daily lives of gamblers who reported an increase in their gambling participation during the pandemic. Exploration of the lived experiences of gamblers reporting an increase of their online gambling practices during the pandemic raises important issues regarding online gambling environment and gambling operator's practices.

Eating Disorder and Autism Collaborative project outline: promoting eating disorder research embedded in a neurodiversity-affirming culture.

EDAC (Eating Disorders and Autism Collaborative) is an innovative project aiming to increase research capacity by supporting collaboration in the fields of eating disorders and autism. EDAC comprises four integrated workstreams to co-produce interdisciplinary research, directed by Autistic individuals with lived experience of eating disorders. Workstream 1 will outline best collaborative practices, informing the research network. Workstream 2 will use arts-based methodologies to set research priorities, with emphasis on the perspectives of underrepresented groups. Workstream 3 will support interdisciplinary collaborations to develop innovative research. Finally, workstream 4 will maximise knowledge mobilisation with the aim of reducing barriers to rapid incorporation of research into policy and clinical practice. A core aim of EDAC is to embed a neurodiversity-affirming culture within eating disorder research and to support the development of a new generation of researchers conducting innovative and meaningful research with the potential to improve clinical outcomes.

A Model for Engaging Citizen Scientists: A Community-Partnered Research Collaboration to Address Inequities for Black Birthing People.

Co-creation of a citizen-science research initiative with a collaborative team of community members and university-based scientists to address regional disparities in maternal and fetal health outcomes for Black birthing people. Citizen scientist-led projects, where community members actively contribute to each discovery step, from setting a research agenda to collecting data and disseminating results, can extend community participatory research initiatives and help reconceptualize traditional research processes. The Pregnancy Collaborative is a citizen-science research initiative and one of nine scientific committees of The Pittsburgh Study-a longitudinal, community-partnered study designed to bring together collaborators to improve child thriving. Ten community members and five university-based scientists participated during all phases of developing a citizen-scientist collaboration over an initial two-and-a-half-year period. Phases include forming the Pregnancy Collaborative and group research ethics training; co-creating a research agenda grounded in shared principles; and community-partnered data collection, analysis, and dissemination. These phases produced three key co-designed products: (1) a mission and vision statement of the Pregnancy Collaborative, (2) a Collaborative-endorsed research agenda, and (3) a citizen-scientist-executed research survey. Lessons learned from the formation of the Pregnancy Collaborative highlight the importance of equitable power distribution through bidirectional knowledge sharing and by centering intellectual effort, lived experience, and tools and resources of those affected by health inequities. Using a citizen science approach to co-designing and executing research helps us move maternal health inequity work from "research on" to "research with."

Fetal alcohol spectrum disorders prevention and clinical guidelines research - workshop report

It is estimated that up to 1 in 20 people in the United States may have a fetal alcohol spectrum disorder (FASD), or the array of physical, cognitive, emotional, and social disorders caused by exposure to alcohol during prenatal development (May et al., JAMA 319:474–82, 2018). While this condition is present in a broad range of individuals and families, it has not previously been examined in the military community, where cultural factors including an increased prevalence of alcohol misuse may pose a unique set of challenges (Health.mil, Alcohol misuse, 2024).The Uniformed Services University of the Health Sciences (USUHS), in conjunction with FASD United, hosted the second annual Workshop on Fetal Alcohol Spectrum Disorders Prevention and Clinical Guidelines Research on 20 September 2023 in Washington, DC. Organized as part of a four-year, federally-funded health services research initiative on FASD in the U.S. Department of Defense (DoD) Military Health System (MHS), the workshop provided a forum for exploring the initiative’s focus and progress; examining current knowledge and practice in the research and clinical spheres; and identifying potential strategies to further improve prevention, screening, diagnosis, interventions, and family support. Building off of the 2022 workshop that covered the state of the science surrounding prenatal alcohol exposure and FASD, the 2023 focused primarily on FASD and efforts aimed at identification and management (Koehlmoos et al., BMC Proc 17 Suppl 12:19, 2023). One hundred and thirty attendees from academia, healthcare, federal agencies, and patient advocacy organizations gathered to share research findings; learn from lived experiences; and discuss initiatives to advance research, screening, and services for at-risk pregnant women as well as families and caregivers supporting individuals with FASD.

On the role of “tactile value” in cultural consumption: an empirical research in the live music industry

ABSTRACT To what extent does the sense of touch matter in cultural consumption? After an extended period of limited social gathering due to COVID-19, it is vital to assess the importance of physical contacts in cultural events. Focused on the live music industry, our paper addresses the following question: How important is the perception and experience of tactile value amongst festival- and concertgoers? For this purpose, we conducted a survey between September and November 2021 and collected 142 exploitable questionnaires. Our goal was to detect structural relationships between latent variables related to touch through a Structural Equation Model. The latter reveals the relative pleasantness of tactile value experienced by our respondents, with effects on their live music experience. In view of the importance of tactile value in live music events, we formulate several recommendations to practitioners and cultural policy in order to further take into account this variable in decision making.

'My words would have more weight': exploring weight stigma in UK dietetic practice and dietitian's lived experiences of weight stigma.

Weight stigma is pervasive within healthcare and negatively impacts both access to care and the patient-practitioner relationship. There is limited evidence on weight stigma among registered dietitians, particularly in the United Kingdom, though data show weight-related prejudice towards people living with obesity. The aim of this study was to examine both explicit and implicit weight stigma in practicing dietitians in the United Kingdom, as well as the lived experience of weight stigma among dietitians, both towards themselves and towards others. An online cross-sectional survey was disseminated between February and May 2022 using snowball sampling. Inclusion criteria were that participants were UK registered dietitians aged 20-70 years. Four hundred and two dietitians responded to the survey (female [94.1%], mean age 40.2 years [standard deviation (SD) 10.7]; White ethnicity [90%]; median 12 years [interquartile range (IQR) 6, 22] within dietetic practice). Mean self-reported body mass index was 25.1 kg/m² (SD 8.7). Most dietitians reported experiencing weight stigma prior to (51%) and postregistration (59.7%), whereas nearly a quarter (21.1%) felt that weight influenced their ability as a dietitian. Weight stigma was experienced across the weight spectrum. Overall participants reported explicit weight bias attitudes, moderate beliefs that obesity is controllable and implicit antifat bias. Within open-ended responses, dietitians reported three key themes related to their personal experiences of weight stigma: (1) experiences of stigma in dietetic practice, (2) impact of weight stigma and (3) perception of weight, appearance and job. This study shows that UK dietitians exhibit both explicit and implicit weight bias towards people living with obesity. Dietitians reported experiencing weight stigma, which impacted their career-related decisions and their perception of their own ability to perform as dietitians. The study highlights the need to address weight stigma and its implications within the dietetic profession.

Sero-Kinship: How Young People Living With HIV/AIDS Survive in Southeast Nigeria.

Research on the lived experiences of HIV survivors, including young people living with HIV, has primarily emphasized broader sociocultural concerns, such as stigmatization and cultural attitudes toward sexuality and gender, while giving less attention to the interconnectedness of these issues with the mental well-being of those affected by the illness. This study, drawing on relational ethnography including observations and interviews at four antiretroviral-administering healthcare facilities in Enugu State, southeast Nigeria, explores how young people living with HIV strive toward viral suppression and how they develop collaborative psychosocial support along with the global efforts in eradicating the HIV epidemic. We found that, in and between themselves, young people living with HIV weave for themselves a network of relationships, though discreetly, to foster and encourage survivorship. Such relatedness, where mutual trust and support have emerged and rebuilt HIV survivors' faith in a livable life, forms what we conceptualize as "sero-kinship." That is, sero-kinship, which focuses on how people create and change meanings in their everyday lives that ultimately contribute to controlling HIV and treatment management, forms an essential foundation on which a life with HIV becomes thinkable, bearable, then manageable, and acceptable.

New words, new lives: employing interpretative phenomenological analysis integrated with strategies from ethnography in researching the lived experience of multilingualism and vulnerability in survivors of torture and modern slavery

ABSTRACT Few studies in applied linguistics address the methodological and ethical issues encountered in studying asylum seekers and refugees. Moreover, more research is needed on the lived-experience of multilingualism and vulnerability to understand better the interrelations between multilingualism, vulnerability, and empowerment. Based on a study which combines Interpretative Phenomenological Analysis with ethnographic approaches this paper explores the impact of multilingualism on the rehabilitation of survivors of torture and human rights violations. It provides researchers with reflections and insights on how to do effective research with vulnerable multilinguals and better understand the role language plays in contributing to lived-experiences of vulnerability. Pochi studi nella linguistica applicata affrontano le questioni metodologiche ed etiche incontrate durante la ricerca con i rifugiati. Inoltre, c'è bisogno di ricerche sull'esperienza vissuta del multilinguismo e della vulnerabilità per comprendere meglio le interrelazioni tra multilinguismo, vulnerabilità ed empowerment. Questo articolo si basa su uno studio che combina fenomenologia ed etnografia per esplorare il ruolo del multilinguismo nella riabilitazione dei sopravvissuti alla tortura e ad altre violazioni dei diritti umani. L'obiettivo è duplice: fornire ai ricercatori riflessioni su come condurre una ricerca più approfondita con individui multilingui vulnerabili e comprendere il ruolo della lingua nelle loro esperienze di vulnerabilità.

Developing an Automated Virtual Reality Therapy for Improving Positive Self-Beliefs and Psychological Well-Being (Phoenix VR Self-Confidence Therapy): Tutorial.

Virtual reality (VR) is an immersive technology in which delivery of psychological therapy techniques can be automated. Techniques can be implemented similarly to real-world delivery or in ways that are not possible in the real world to enhance efficacy. The potential is for greater access for patients to effective therapy. Despite an increase in the use of VR for mental health, there are few descriptions of how to build and design automated VR therapies. We describe the development of Phoenix VR Self-Confidence Therapy, designed to increase positive self-beliefs in young patients diagnosed with psychosis in order to improve psychological well-being. A double-diamond, user-centered design process conducted over the course of 18 months was used, involving stakeholders from multiple areas: individuals with lived experience of psychosis, clinical psychologists, treatment designers, and VR software developers. Thirteen meetings were held with young patients diagnosed with psychosis to increase the understanding and improve the assessment of positive self-beliefs, help design the scenarios for implementing therapeutic techniques, and conduct user testing. The resulting Phoenix therapy is a class I United Kingdom Conformity Assessed (UKCA)-certified medical device designed to be used on the standalone Meta Quest 2 (Meta Platforms) headset. Phoenix aims to build up 3 types of positive self-beliefs that are connected to psychological well-being. In a community farm area, tasks are designed to increase a sense of mastery and achievement ("I can make a difference"); in a TV studio, users complete an activity with graded levels of difficulty to promote success in the face of a challenge ("I can do this"); and in a forest by a lake, activities are designed to encourage feelings of pleasure and enjoyment ("I can enjoy things"). Phoenix is delivered over the course of approximately 6 weekly sessions supported by a mental health provider. Patients can take the headsets home to use in between sessions. Usability testing with individuals with lived experience of psychosis, as well as patients in the National Health Service (aged 16-26 years), demonstrated that Phoenix is engaging, easy to use, and has high levels of satisfaction.

Living With Cancer: Child-Parent Dyads' Perspectives and Experiences From a Private Tertiary Care Hospital in Pakistan.

The life experiences of children with cancer and their parents as individuals have been well documented in literature. However, little is known about their experiences as child-parent dyads in Pakistan regarding these children's quality of life. Thus, the study was conducted in the context of the family-centric society of Pakistan. In-depth interviews were conducted with 28 participants (14 child-parent dyads), comprising 9 female and 5 male children receiving cancer treatment and 8 mothers and 6 fathers (primary caregivers). All the participants were Muslims and hailed from diverse ethnic backgrounds, and most belonged to middle socioeconomic backgrounds. Thematic analysis was performed using Braun and Clarke's (2006) framework, which revealed four themes: (1) Stress, Fears, and Optimism; (2) Reactions to Restrictions; (3) Adaptation and Coping; and (4) Support Structure and Mechanisms. The findings indicated that children's and parents' daily lives were affected in various ways during the children's cancer journey. They faced several challenges which impacted their well-being. Particularly, the children considered their symptoms as restrictions in the way of carrying out their routine lives. However, children and parents also elaborated on using different coping strategies, such as play, reminiscing the past, incorporating religious practices into their daily routines, and keeping a family-centred approach towards the child's care. The parents also recommended that cancer-specialised services and support groups should be accessible. Conclusively, these findings are useful for healthcare providers in giving family-centred care to afflicted families and devising innovative interventions that address the needs of children with cancer and improve their quality of life.

First Peoples economic landscape: analysis of the ecosystem

PurposeThis paper focuses on First Peoples Founders of for-profit entities in Australia and the role of the Indigenous Economic Development Agencies (IEDAs). We explore the challenges facing First Peoples enterprises, influenced by historical exclusion from white settler society, and the practices of the IEDAs from the perspectives of Founders and agencies.Design/methodology/approachA qualitative study utilising Indigenous Standpoint Theory and Indigenous research methods, elevating Founder perspectives, in the Yaruwu language - the Nilangany Ngarrungunil, owners of knowledge, to that of research collaborators.FindingsThe First Peoples economic landscape is continually evolving with IEDAs contributing to that evolution despite contentious identity ownership definitions. Founders secure in their own identity, are focused on self-determination and opportunities provided by IEDAs, government and corporate sector policies. However, opportunities are undermined by ongoing racism, discrimination and prevailing stereotypes leading to homogeneity, invisibility and exclusion. Founders question organisational commitments to overcoming systemic exclusion in particular their commitment to building respectful relationships and understanding First Peoples ways of working. Instead, Founders focus on building a sustainable First Peoples economic ecosystem through relationship-based practices rather than transactional reconciliation which ignores the reality of the lived experience of everyday racism.Originality/valueThis study extends the scholarly discourse on First Peoples for-profit enterprise success written with an Indigenous voice. We demonstrate how this Founder generation are strengthened by culture with identity infused in organisational practices underpinning their aspirations of economic self-determination.

Young onset dementia and driving cessation: a scoping review of lived experiences

BackgroundDriving cessation is one of the most challenging life transitions, associated with multiple negative consequences for individuals living with late-onset dementia. This paper extends the literature as to date there is no published review that details the experiences of people living with young onset dementia (“YOD”).MethodsA comprehensive search of the literature was conducted using the scoping review methodology.ResultsTen studies were included for full text review of 1634 initially identified through database searching. The results of the included articles indicated areas of concern for people living with YOD and their family members including, loss of independence; role change; threat to self-identify; feelings of isolation, grief; acceptance; predictors of driving cessation.ConclusionThere is a lack of robust evidence related to driving cessation and the experiences of people living with YOD. No published paper reported psychosocial interventions specifically targeted at supporting persons with YOD through driving cessation.

Notions of the visible and the invisible: visualising the otherness of women with invisible (gynaecological) illness

The invisible gynaecological condition, Endometriosis, is mostly viewed from a distorted frame of reference and with a negative connotation, influenced by societal factors such as expectations of the female body, misperceptions of illness and the way in which women are visually represented. Although a life-altering condition, acknowledging its many complexities is what is sought in honest representation of such lived experiences, exposing the visible and invisible, emic and etic perspectives. This written exchange between visual arts and design researcher, Bruce Cadle and designer-illustrator Micaela Scholtz, lays bare the facts and critically analyses the motivation for and influences incipient in visual research that expresses the lived experience of Endometriosis. The intention is to dispel the myths surrounding expectations of the female body and the lived realities of enduring invisible illness. This paper addresses aspects of the politics of health and the social understanding thereof, whilst emphasising the visualisation of illness through visual narrative methods and the autoethnographic voice. Essential to this research is that the visualisations of Endometriosis juxtapose the perceived/lived reality dichotomy intent on provoking understanding, empathic connection and opportunity for broader conversations onward.

A Review of Feminist Legal Theory on Abortion Regulations for Rape Victims in Indonesia

The purpose of this study is to review and evaluate abortion regulations for rape victims, especially the requirements outlined in the Health Law and Government Regulation No. 61 of 2014 concerning Reproductive Health, using feminist legal theory as an analysis framework. This study uses an extra-doctrinal methodology outside the laws and regulations, emphasizing feminist legal theory as the basis of thought. The findings suggest that abortion regulations for rape victims still largely ignore women's life experiences and put them in difficult situations. The marginalization of women victims of rape in accessing safe abortion is a consequence of the gestational age limit for abortion, which fails to acknowledge the different experiences of women and treat them as a homogeneous group. To effectively address this issue, it is critical to involve the participation of women who have experienced rape, including victims of sexual violence, in the development of policies related to abortion for rape victims.