Lived Experience Research Articles

Evaluating Stigma Toward Individuals With Substance Use Disorder Among Prelicensure Nursing Students

Background: Seventeen percent of individuals in the United States live with substance use disorder (SUD). Nursing curricula may not adequately address SUD, and stigma can impact care. Purpose: This project aimed to measure stigma toward people with SUD among nursing students. Methods: Surveys were administered to prelicensure nursing students. Stigma was measured using the Opening Minds Provider Attitudes Toward Opioid-Use Scale. Students were asked about personal experience with SUD and perceived adequacy of SUD-related curricula. Results: A total of 193 students participated. The mean stigma score was 31.35. Those with personal experience had lower stigma scores than those without ([95% CI 2.26-9.23]; P value = .0014). Most students (71.0%) desired to see content from individuals with lived experience incorporated into curriculum. Conclusion: Addressing stigma in SUD education is critical for improving future patient care. Nursing schools should consider incorporating stigma-reducing content, including perspectives from individuals with lived experiences, into SUD curricula.

Delivering Education Through a Podcast to Change Provider Practice: A Mixed Methods Evaluation of a Fetal Alcohol Spectrum Disorders Podcast

Education delivery through multi-media such as podcasts has become more common yet impacts on behavior change are understudied. To address this, we evaluated an educational podcast available for continuing education (CE) credit to all providers but specifically tailored for children and/or women-focused specialties (i.e., family medicine, OBGYN, pediatric, prenatal, primary care). The podcast consisted of three 20-minute episodes focused on: (1) prevalence of Fetal Alcohol Spectrum Disorders (FASDs); (2) perspectives from those with lived experience; and (3) treatment and prevention of FASDs at the provider level. Podcast effectiveness to educate providers was assessed using a mixed-methods evaluation. Participants completed registration information and an immediate post-test, which examined provider knowledge, self-efficacy, and practice behaviors related to FASD prevention. Qualitative data was collected from a sample of those who completed the post-test via focus groups conducted 6 months later. From March 2021 to March 2022 there were 579 listeners with 103 claiming CE credit (the evaluation sample) who participated in the evaluation. Participants reported high FASD-related knowledge; more than 85% were better able to educate patients about prenatal alcohol use risk and FASDs post-podcast. The majority (59.3%) intended to change practice based on what they learned. Qualitative results contextualized the benefits and challenges to changing practice, including structural barriers, and suggestions for enhancing the podcast in future seasons. Education delivered through podcasts can be effective in improving provider knowledge and self-efficacy and in promoting practice change. Podcasts offer broad reach and accessibility providing an opportunity to educate on topics including FASD.

Disability barriers autistic girls face in secondary education: A systematic review.

Autistic adolescent girls face complex and diverse challenges in the school setting, specifically mental health issues, unmet social and education needs, and social exclusion. The purpose of this review was to provide a general idea of research relating to the experiences of autistic females in secondary school settings by reporting on their experiences and the lived experiences of autistic women reflecting on their past. Based on the identified articles, the barriers girls face in the compulsory education setting centred on four themes of societal barriers grounded in gender; the institutional or physical barriers of schools; social and communicative expectations; and stigmatization. The study highlighted that there is a need to sensitize and educate widely on the topic of autism for teachers, to support staff, school psychologists and peers of autistic youth. The results call attention to the need for future research to focus on the different lived experiences and knowledge of autistic girls.

BLESSED MARCELINA DAROWSKA – A NOTABLE EXAMPLE OF POLISH MYSTICISM OF THE 19TH CENTURY

Blessed Marcelina Darowska (1827–1911), founder of the Congregation of the Sisters of the Immaculate Conception, stands out from the numerous Polish mystics of the 19th century primarily because of her rich experience of mystical life and the original theory of mysticism (mystology) contained in her writings. She left a two-volume ascetic-mystical treatise, spiritual notes (“Diary”), many letters to spiritual directors and some sisters, as well as texts of retreats that she preached to students and various people. She created her own mystical language.As an outstanding representative of 19th-century Polish mysticism, she stands out from other trends in mystical life, including: healthy patriotism, Marian piety with particular emphasis on the title of Mary Queen of Poland, apostolate in the education of girls and women, and the development of various forms of folk piety that strengthen National identity.It had a wide impact on Polish, Belarusian and Ukrainian society, mainly through educational institutions for girls. She also maintained active contacts, including: with Saint archbishop Józef Bilczewski, Saint archbishop Szczęsny Feliński and other outstanding personalities of the spiritual and social life of those times.

Across landscapes and lifespan: causes and solutions of gender-based violence from survivors of sexual violence against women and girls (VAWG)

ABSTRACT Violence Against Women and Girls has become a focus of sexual violence prevention policy, but how do survivors relate to this framing? This study listened to 13 survivors across 3 focus groups in one UK region. Questions focused on sexual violence terminology, settings and perceptions of safety. Challenges around reporting and policy revisions were discussed. Thematic analysis highlighted a discrepancy between how survivors experience sexual violence and how policy frames it, notably around structural gender inequality drivers and the scope and span of sexual harassment. Participant's solutions focused on prevention through education across institutions, targeting boys and men. Clear evidence of a justice gap was illustrated through lived experience of reporting, many felt their own vulnerability made them both a target and a less credible victim. Survivors outlined what they needed from reporting mechanisms recognising the span of gender-based violence across the landscapes and lifetimes of these survivors. PRACTICE IMPACT STATEMENT This qualitative study speaks to the accounts of a small group of sexual violence survivors who felt their experiences should be addressed through a wider structural gender inequality lens. They felt prevention through education should focus on males and span institutions. Their experiences of all-encompassing, lower-level harassment should be captured through supportive and compassionate reporting mechanisms but the police need to earn back trust.

Intervention development and optimisation of a multi-component digital intervention for the monitoring and management of hypertensive pregnancy: the My Pregnancy Care Intervention.

Hypertensive disorders of pregnancy affect around 10% of pregnancies and remain a major cause of maternal and foetal morbidity and mortality. Trials have shown that self-monitoring blood pressure during pregnancy is safe, but self-monitoring alone does not improve blood pressure control or pregnancy outcomes. This study aimed to develop and optimise a multicomponent intervention to support blood pressure monitoring, hypertension management and urine testing within current care pathways. Relevant literature, input from patient and public contributors (PPI) and stakeholder groups, and the researcher's previous experience were used to develop an initial intervention. Think-aloud interviews and focus groups with women from diverse backgrounds with lived experience of hypertension in pregnancy and healthcare professionals provided feedback on the intervention prototype (n = 29). The MRC Framework for Developing Complex Interventions guided the processes to optimise the intervention's acceptability and maximise engagement. A detailed tabulation of participants' views and logic models was produced using the COM-B model of Behaviour Change. The prototype intervention was acceptable and viable to both pregnant women with experience of hypertensive pregnancy and healthcare professionals. Emerging themes centred on how the intervention could be optimised within current National Health Service care pathways and the lives of pregnant women to support behaviour change. Key target behaviours to support the intervention included increasing understanding of blood pressure management, engagement with the intervention, monitoring blood pressure and urine and taking appropriate actions based on those readings. This informed the development of recommendations involving clear action timelines for women and evidence-based guidance to support decision-making by healthcare professionals. The findings were used to produce the multi-component My Pregnancy Care intervention, consisting of a smartphone application and an information leaflet to support blood pressure self-monitoring and proteinuria self-testing, self-management of antihypertensive medication and smartphone application use. This research provided comprehensive insight into the needs of pregnant women with hypertension and their healthcare teams regarding self-monitoring and management of blood pressure. This supported the development of a tailored multi-component digital intervention that addresses barriers to blood pressure self-management by being user-friendly, persuasive and acceptable. It is hoped that the intervention will support the monitoring and management process, collaboration between healthcare professionals and women, clinical action and improved clinical outcomes.

Shivering Hopes: A Qualitative Inquiry into the Experiences of Family Caregivers of Critically Ill Patients Reliant on Health Care Technology.

The aim of the study was to assess the lived experience of family caregivers of critically ill patients sustained by healthcare technologies in Benin-City, Nigeria. This study employed a hermeneutic phenomenological design. Data were collected through in-depth individual interviews with ten participants, observations, and field notes. The analysis was conducted using Paul Ricoeur's Theory of Interpretation and managed with Nvivo data management software. The study was conducted at the University of Benin Teaching Hospital (UBTH) from August 2022 to December 2023, with a sample size of 10 participants. The study's findings revealed that the majority (70%) of family caregivers were at least 30 years old, Christian, and had spent a minimum of two weeks in the intensive care unit (ICU). Ninety percent had received post-secondary education. Three themes emerged from their experiences: "Journeying into the unknown," "Technological care is an ecosystem," and "Exhibiting emotional intelligence." In addition to that, the findings also showed that upon learning of their loved one's''' transfer to the ICU, caregivers experienced mixed emotions, including palpable fear of death. This fear was linked to the high costs of management, a tense hospital environment, lack of involvement in care, institutional shortcomings, and diminished motivation due to frequent deaths in the ICU. Family caregivers must be engaged in formulating and implementing care plans to provide holistic care that meets the needs of both patients and their caregivers. Hospital administrators should take proactive steps to reduce treatment costs, making care more affordable for families. Furthermore, comprehensive programs aimed at addressing the institutional flaws identified in this study must be implemented urgently.

Evaluating Teachers’ Performances: Travails of School Heads in the New Normal

This study explored the lived experiences, challenges encountered, coping mechanisms and insights of public elementary school heads on evaluating teachers in schools using the RPMS-IPCRF in the new normal. The participants were coming from DepEd Region XI, Division of Davao City, specifically in the schools of Paquibato District. There were eight (8) school heads who participated in the study, and were purposely selected. This study made use of a phenomenological approach to extract the ideas from the participants. The virtual in- depth interview was employed to gather significant information with regard to their respective lived experiences. Using the thematic analysis, the following themes emerged pertaining to their lived experiences: evaluation for performance improvement, evaluation as a difficult task, teachers providing outstanding educational services, and hurdling evaluation challenges. Further, there were also three (3) subthemes that emerged on the challenges experienced by the participants. These are the lack of RPMS-IPCRF orientations, unattainable key results areas, and rater-ratee relationship issues. The coping mechanisms of participants on the challenges they experienced were: RPMS-IPCRF re-orientations, team building for strengthening relationships, and regular coaching and monitoring. The educational management insights drawn from the participants were the importance of LAC sessions in schools and the value of rater-ratee collaborations. Thus, it is crucial to provide effective evaluation strategy training to school heads with additional support and continual professional development endeavors to boost their effectiveness and foster desirable management and evaluation skills amidst the pandemic.

Clay in Art Therapy: A Case Report of a Sexually Abused Child

Contemporary art therapy has focused little on the healing potential of using clay with children that have experienced sexual abuse. In this case report, I provide a brief introduction of a 12-year-old male followed by a discussion of his clay sculptures made in group art therapy sessions over a two-week period during an inpatient psychiatric stay. The tactile and sensorimotor activity of working with clay provided trauma informed benefits such as focusing on the present-moment experience, safely developing somatic awareness, and cultivating self-regulator capacity. Additionally, the client’s life-like clay objects permitted him the opportunity to create personalized imagery that symbolized his unconscious processes and life experiences and was a key step toward successful transference and artistic sublimation.

Thinking Theoretically in Nursing Research-Positionality and Reflexivity in an Interpretative Phenomenological Analysis (IPA) Study.

This paper explores the application of positionality and reflexivity drawing on the experience of a British Minority Ethnic (BME) group senior nurse researching nurses with the same ethnic heritage in an IPA study. It explores how using IPA informed reflexivity and positionality as a researcher who shared the same ethnicity with the research participants. The IPA study allowed for the exploration of Internationally Educated Nurses' (IENs) perspectives on their integration into British healthcare and their navigation of career progression. The central aims of an IPA study are to understand the participant's world, its description, the development of a clear, and open interpretative analysis with a descriptive focus on the social, cultural and theoretical context, and the participant's sense-making of their lived experience. In this paper, we discuss how the lead researcher employed reflexivity, stated his intentionality and positionality in the conduct of the IPA study. This paper discusses some examples of the effects of positionality and reflexivity in the conduct of research by researchers of different racial background, and explicate the influence of personal and professional experiences of a researcher in using reflexivity and positionality to ensure cross-cultural validity and reliability of an IPA research. This paper concludes that appropriate use of reflexivity and positionality in an IPA study may recognise the personal and professional influence of a researcher's experiences on the research process, including their ethnicity.

Outputs from a model of co-research with older care-experienced people in Sweden to advance eldercare services.

Within the contemporary policy turn towards co-production and co-research in Sweden, older people, practitioners and researchers alike have expressed uncertainty about how to undertake co-research. Moreover, scepticism persists about the merits and contributions of co-research and co-production to research and service development. In this paper, we aim to describe a co-research model developed with older care-experienced lay co-researchers and explore the utility of our model's outcomes to social care research and practice. In a Participatory Action Research project, we established a team of three co-researchers by professional experience and eight lay co-researchers by lived experience who were over age 75. Our team undertook a complete study cycle from inception and funding through to knowledge exchange and dissemination. Our process lasted one year and comprised three phases: the group alone establishing collective knowledge, testing knowledge in peer interviews with acquaintances, exchanging knowledge in events with multi-sector actors. We generated and analysed data concurrently in fortnightly workshops and round-table meetings using procedures inspired by framework analysis to produce themes illustrated by vignettes. We highlight our co-research model's utility to social research, policy and practice under three themes. Expressly, how our approach (1) reaches and engages older people who are isolated at home, (2) generates out-of-the box thinking and innovative solutions for service development and research, (3) recognizes and benefits from older people's authentic experience and knowledge. We critically reflect upon these three themes and the conditions that lead towards or away from the adoption of key co-research principles. Public services and research and development units working in the interests of older people can take inspiration from our co-research model when seeking to meet the challenges brought by new reforms towards closer community involvement. Despite messiness in the process, integrating and embedding principled co-research and co-production can bring clarity and structure to the issues that matter most to older people, and draw organisations closer to the communities they serve.

Aspekte des Alter(n)s im Schwankzyklus Till Eulenspiegel

In society and in literature, age is often associated with positive (wisdom, life experience) or negative aspects (stubbornness, impatience). The article examines the extent to which the biological age influences social relationships, experiences and/or behaviour, and the reactions of the archetypal German prankster and his interaction partners.

Applying the volunteer process model to understand the lived experience of habitual volunteers: during COVID-19

This article identifies the volunteer process model (VPM) as a useful umbrella term to situate and understand the lived experience of volunteering of a small sample of habitual volunteers during the COVID-19 pandemic. We use a methodological approach based on interpretive phenomenological analysis to offer granular analysis of lived experiences of committed volunteers. Our analysis suggests, first, that the sample of committed volunteers lived experiences allow critical insights into how a particular user group can establish value and meaning and how these can be interpreted. Second, that the use of the VPM as a unifying concept allows a critical reflection on volunteering as an experiential activity that is wholly humanistic, and that contributes towards an understanding of volunteer engagement beyond the ‘black box’. This article provides an empirical basis for these arguments, offering a framework that can take forward this limited research as useful to provide explanatory rationales and expanded ways of organising and managing volunteer engagement.

De Viva voz: An Intersectional Approach to Assessing Student Experience and Fostering Equity at HSIs

ABSTRACT This research project outlines students’ perceptions of belonging, equity, visibility, representation, and culture at their Hispanic Serving Institution. In Latin America, the saying “De viva voz,” emphasizes acknowledging voz [voice]. Through an intersectional framework, this work acknowledges students’ voices, identities, and lived experiences as foundational to identify the barriers at an HSI at the Mexico-United States borderlands region. In doing so, we are able to propose a series of strategies that respond to the cultural context of the university, and the needs of students in order to eliminate structural barriers. Further, this paper explores what it means to be an HSI and the tenuous relationship between Hispanic culture and students at a US university. The implications of this research project add to the body of the literature that challenges homogeneous notions and conceptualizations of HSIs limited to enrollment of Hispanic and Latinx students. In doing so, “De viva voz” names and challenges the historical forms of discrimination and erasure that Latinx, students of color and other minoritized populations have endured in university settings. Moreover, this work models student-centered research practices for other Hispanic Serving Institutions interested in promoting intersectional practices to improve campus climate and foster belonging, equity, inclusion, and diversity.

Exploring challenges and politics of knowledge production in the global South - Evidence from Bangladesh’s aid and development sector

This article takes Bangladesh as a case study and explores the motivations (or lack of), challenges, and politics of knowledge production with a particular focus on development scholarship and practice. This piece is based on qualitative research methods and draws from 25 semi structured interviews with highly experienced and senior Bangladeshi development practitioners and academics. Empirical evidence and consequent analysis presented in this work contribute to the debates around the schism in access to resources, politics of aid, and power over knowledge production. This article also reveals local cultural contexts as consultancy works are perceived to be more financially rewarding. This is manifested through current practices that have created a condition where local researchers and practitioners feel they have no time (or incentive and motivation) to engage in knowledge production. Moreover, this article explores whether one’s race and/or nationality play any role in knowledge production, and how the respondents reflect about these issues based on their lived experience. In doing so, findings of this study further the arguments of structural inequality and colour-blind approach within aid and global development landscape. This article offers a rich account of how existing practices favour staff members from the donor countries and exclude Bangladeshi researchers and practitioners from knowledge production processes. This article also brings forward an important issue which highlights that, as perceived by the respondents of this study, one’s institutional affiliation with prestigious Western institutions might matter more in knowledge production (as we know it) than the content, ideas and credibility of knowledge that are generated in the global South. This article contends that by excluding, rejecting, side-lining, and subjugating knowledges produced in the global South development policies and practices will continue to manufacture a particular type of knowledge that will circumvent equity in knowledge production and perpetuate Western hegemony.

Emotion as Cause, Effect, Mediator, and Moderator in Marketing: An Integrative Review and Future Research Directions

ABSTRACTThe study aims to synthesize four decades of research on emotions in marketing by delving into the specifics of who, where, how, what and when. Using quantitative and qualitative methods, 453 articles from top marketing journals were analysed. The study first presents a descriptive account of publication and citation metrics and theoretical underpinning, resolving contestation around emotion function as cause, effect, mediator and moderator. Secondly, using science mapping, along with performance and content analysis landscape of emotion research is unravelled by identifying eight clusters. These clusters placed on development timelines provide a bird's eye view and are presented on a three‐level categorization: Theory, Characteristics and Context. Clusters 1 and 2 focus on theoretical underpinning of emotion interrelationship with cognition and construal. Clusters 3 and 4 emphasized unique characteristics of emotion as antecedents and outcomes to/of evaluations/behaviours. Clusters 5, 6, 7, and 8 emphasized distinct emotional settings—notably, cluster 5 accounts for emotion interaction across service encounters and elements of service interface. Cluster 6 emphasizes effectiveness, advantage and measurement of emotion in advertising. Cluster 7 highlights how emotions are profoundly shaped by and influence social interactions/behaviour, and Cluster 8 underscores emotion embedded in brands, products and life experiences. Finally, a diverse yet unified field of emotion research in marketing is advocated by reflecting on findings, identifying opportunities for cross‐pollination, highlighting cluster‐specific future research directions and developing an integrative framework. The framework, beyond decision‐making, synthesizes distinct ways emotion arises and permeates marketplace and accounts for alternate lenses to emotion functioning, promoting newer research.

The Intersecting Effects of Lifetime Experiences of Homelessness and Incarceration on Cognitive Aging and Dementia Risk Factors in the United States.

Alzheimer's disease and related dementias (ADRD) remain a pressing concern in the US, which also has one of the highest incarceration rates worldwide. Existing research has analyzed dementia risk and care among currently incarcerated and homeless populations; this paper fills a gap by examining later-life cognitive disparities facing formerly incarcerated and/or homeless individuals. Using Health and Retirement Study data (HRS; 1998-2018), we tested whether formerly homeless and/or incarcerated people had earlier onset of cognitive decline, and whether they were more likely to have modifiable risk factors for ADRD than those without such experiences. We estimated prevalence of mild cognitive impairment (MCI), dementia, and self-reported ADRD diagnosis. We also used repeated observations of cognitive functioning coupled with nested nonlinear regression to examine the onset of accelerated cognitive decline. Adjusting for demographic variables, formerly homeless and/or incarcerated participants have increased odds of having risk factors for dementia, including smoking, drinking alcohol, depression, mental illness, and discrimination from healthcare providers and police. Diagnosis of MCI and ADRD were more common among participants reporting a history of incarceration or homelessness. Nested nonlinear regression revealed that previous experiences of incarceration or homelessness-alone or together-are associated with earlier onset of accelerated cognitive decline compared to those who experienced neither. This study suggests that, even if they occur earlier in life, homelessness and incarceration experiences may increase risk of poorer cognitive health in late life. Future work is warranted to understand the lifelong consequences linked to this adversity.

Dancing in the archive: Bodily encounters, memory, and more‐than‐representational participatory historical geographies

AbstractThis paper explores the potential of participatory methods and practices to address the methodological difficulties surrounding the historical geographies of dance, and moving bodies, within archival research. Dance has long challenged traditional notions of the ‘archive’. While non‐representational cultural geographers have privileged dance's ability to generate affect and embodied expression, historical geographers have predominantly struggled to engage with moving bodies through traditionally ‘disembodied’ archives. Ephemeral and embodied, dance escapes conventional historical documentation; this methodological challenge demands a more creative, participatory, and more‐than‐representational approach to historical geography and its privileging of the ‘archive’. Focusing on tap dance and its circum‐Atlantic performance, this paper will explore how bodily encounters with and within the archive can lead to new research questions, through contemporary embodied participation in creative practices. By combining participatory approaches with more‐than‐representational historical geographies, it is possible to reconcile the history and politics of dancing bodies with corporeal and affective dimensions of the past. This dual approach demands working with creative communities as a researcher, in the past and the present, to draw out previously marginalised voices. This paper discusses three specific methods: oral histories and records of lived experiences; approaching the ‘body’ as an archive; and fostering public historical geographies, including walking tours, memorials, and festival participation. The paper finally considers how these participatory approaches work to build memory, community, and place‐making through shared heritage.

Time for Care: Male and Female Voices Based on Their Caregiving Experiences

Background/Objectives: To understand the lived experiences of the informal caregivers of people with chronic noncommunicable diseases and their interpretations of the significance of that care. The perspectives of men and women interacting with people in a situation of chronicity are examined. Methods: This qualitative, phenomenological, hermeneutic study was based on Van Manen’s comprehensive and interpretative vision. Criterion-oriented non-probability random sampling was used. In-depth interviews were used to collect the information. Twenty informal caregivers participated in the study. Results: The following five themes emerged: transformation of the caregiver’s world; uncertainty of care; tireless guardianship and unwavering devotion; isolation and emotional exhaustion; and imbalance between caring for others and the self. Conclusions: The experience of informal caregivers reveals that both men and women face significant challenges, albeit from gender-differentiated perspectives and experiences. Men and women elaborate different meanings of caregiving, reflecting their gender roles and expectations. Therefore, an inclusive and equitable approach that recognizes and addresses these gender differences is essential in order to improve the support and quality of life for all informal caregivers, respecting and valuing their unique voices and experiences. An inclusive and equitable approach that recognizes gender intersections is required to improve support and the quality of life for informal caregivers.

Examining healthcare access with physical vs. telehealth options: Promise and peril for socially vulnerable older adults

IntroductionThis paper seeks to understand barriers to healthcare access faced by socially vulnerable older adults in Chicago using qualitative analysis. As the U.S. population ages, ease of healthcare access by older adults grows in importance. Yet, current literature lacks an examination of pain points and coping strategies in accessing healthcare, specifically by socially vulnerable older adults. This is especially relevant as virtual telehealth access and transportation options that shape healthcare access evolve rapidly. MethodsIn this work, we conduct three listening sessions with 40 total participants to understand the lived experiences of Black and Latino older adults living in low-income areas of Chicago. Transcript data was analyzed using qualitative concept and emotion coding to identify vulnerabilities that older patients face in accessing care. ResultsThis work highlights five key takeaways from the qualitative analysis: 1) technology struggles and prospects in accessing healthcare, 2) social resources for coping give rise to tension between dependence and autonomy, 3) system disconnects (medical-pharmacy-transportation) represent key pain points, 4) different means of accessing healthcare (traditional transportation vs. telehealth) are value and emotion ladened, 5) different means of observing lead to new methodological insights. ConclusionOvercoming healthcare access barriers for older adults ultimately requires analysis of specific interfaces between infrastructure, healthcare, and communications systems. Solutions should prioritize the autonomy of older adults by offering physical accessibility and customized technology. The three intervention policies recommended in this paper include: health kiosks implementation, digital access classes, and specialized training for transit drivers and medical staff.