Lived Experience Research Articles

Examining the experiences of vulnerably housed patients visiting Kingston, Ontario’s emergency departments: a qualitative analysis

IntroductionVulnerably housed individuals access emergency departments (EDs) more frequently than the general population. Despite Canada’s universal public health care system, vulnerably housed persons face structural barriers to care and experience discrimination from healthcare providers. This study examines how vulnerably housed persons perceive their experience of care in the ED and Urgent Care Center (UCC) in Kingston, Ontario and aims to develop strategies for improving care for this group.MethodsAs part of a larger mixed-methods study, narratives were collected from participants attending the ED/UCC as well as community-based partner organizations, asking them to describe an experience of a recent ED visit (< 24 months). Participants could identify as members of up to three equity-deserving groups (EDGs) (for example homeless, part of an ethnic minority, having a disability, experiencing mental health issues). Coding and thematic analysis were completed for the experiences of participants who identified as being vulnerably housed (n = 171). Results were presented back to individuals with lived experience and service providers working with clients with unstable housing.ResultsParticipants reported judgement related to a past or presumed history of mental health or substance use and based on physical appearance. They also often felt unheard and that they were treated as less than human by healthcare providers. Lack of effective communication about the ED process, wait times, diagnosis, and treatment led to negative care experiences. Participants reported positive experiences when their autonomy in care-decision making was respected. Furthermore, having a patient-centered approach to care and addressing specific patient needs, identities and priorities led to positive care experiences.ConclusionsThe ED care experiences of vulnerably housed persons may be improved through healthcare provider training related to trauma-informed and patient-centered care and communication strategies in the ED. Another potential strategy to improve care is to have advocates accompany vulnerably housed persons to the ED. Finally, improving access to primary care may lead to reduced ED visits and better longitudinal care for vulnerably housed persons.

Future music therapy programming and research for adults with substance use disorders: A reflexive thematic analysis of service user recommendations

ABSTRACT Introduction Music therapy (MT) can be beneficial regarding craving, motivation, and treatment readiness for adults with substance use conditions (SUC). However, there is a lack of literature investigating service users’ preferences and recommendations regarding MT programming and research. Informed by the recovery movement and evidence-based practice, the purpose of this study was to understand the preferences and recommendations for future MT programming and research of adults with SUC. Method Author 1 provided 24 group recreational MT and songwriting sessions to adults with SUC in a detoxification unit. Author 2 then individually interviewed 46 participants who volunteered to share their perspectives and recommendations regarding future music therapy programming and research. We used an inductive approach to reflexive thematic analysis to analyze data and had a music therapist provide trustworthiness to ensure our findings were credible. Results We organized 12 subthemes into four major themes that described participants’ preferences and recommendations for future MT programming and research for people with SUC: Unit factors; The holistic nature of addiction; MT factors; and Research factors. Findings provided situated context regarding recommendations for MT programming, what to investigate, and how to best conduct the research. Discussion As participants had the lived experience of a SUC and had experienced MT, their recommendations can provide a framework for MT programming and different methods for how to conduct MT research. Implications, limitations, and suggestions for future research are provided.

Regulated Pandemic Spaces: Spatial Crises in COVID Comics.

Close-reading sequential comics and cartoons such as He Zhu's "Lockdown," Rivi Handler-Spitz's "Morning Commute," Yang Ji's "Quarantine," and Thi Bui, Will Evans, Sarah Mirk, Amanda Pike, and Esther Kaplan's "In/Vulnerable," this article investigates the networked spatial crises that have emerged during COVID-19. As the global pandemic reshaped social, economic, and cultural landscapes, it is crucial to understand the spatial implications of these transformations. By analyzing graphic medical texts, which serve as visual narratives that capture the lived experiences and perceptions of individuals within these crises, the present essay offers a nuanced exploration of the intricate relationships between space, society, and the effects of the pandemic. The article identifies and examines the various spatial crises that have emerged in the COVID era, such as disrupted urban environments, altered social dynamics, spaces of contamination, contraction of space, and the reconfiguration of workspaces. Drawing on theorists like Michael Foucault and Henri Lefebvre, this essay illustrates how these crisis-induced spatial transformations are represented, experienced, and contested. Ultimately, the article not only contributes to a deeper understanding of the complex interplay between the pandemic and space but also addresses the challenges of our evolving world.

Original Research: The Lived Experiences of Nurses as Patients: A Qualitative Study.

An ED admission and hospitalization are scary experiences for anyone, and potentially more so for nurses. Yet there is scant information about nurses as patients in the nursing research literature. This likely reflects a general tendency among researchers to study the needs of patients but not those of nurses. This qualitative phenomenological study sought to explore the lived experiences of nurses who were admitted as patients to a hospital directly from an ED. A sample of nurse patients 21 years of age and older and including various genders, nursing specialties, and diagnoses were recruited using maximum variation purposive sampling. A semistructured interview guide was created, and data were collected through individual interviews conducted either face-to-face or via telephone. Data were coded manually, and thematic analysis was conducted using Dedoose software. The analysis revealed that many participants had experienced tremendous undue stress during their hospitalization. Four themes were identified: to tell or not to tell, pulling the nurse card, taking one's care into one's own hands, and having to make medical decisions while sick. The study findings indicate that nurses who are hospitalized have different needs than do hospitalized individuals in the lay population. The findings inform our recommendations, which health care organizations, nurse educators, and nurse leaders can use to promote smoother, more compassionate care for nurse patients. Staff nurses can use them to better prepare themselves for caring for a nurse patient-or becoming one. The study findings can also serve to guide future research.

Measuring Patriarchy in Italy*

ABSTRACT Patriarchy is an abstract concept; however, its consequences are visible and substantial in society in an endless list of events that mainly affect women’s lives, but do not exclude men’s life experience either. By defining a patriarchy index for Italy—for the first time ever—this article aims at describing patriarchy, from an economic perspective, as a complex aggregate, based on several stereotypes, represented by a series of variables related to behaviours, classified in four domains: the degree of patrilocality, the dominance of men over women, the dominance of older over younger generations, and socio-economic domination. As it is structured, the patriarchy index might complement the more famous Gender Equality Index (GEI), calculated by the European Institute of Gender Equality (EIGE), with a measure that focuses on the ‘invisible’ component of gender inequality. This case study on Italy represents an opportunity to confirm the well-known socio-economic dualism between regions in the North and South from a gender perspective. Regions in the North and Central regions score very close results and show that, although patriarchal stereotypes are still present and strong, patriarchy is becoming minoritarian. On the opposite side, the South still shows strong and majoritarian patriarchal patterns.

IMPLICIT STRATEGIES OF ELEMENTARY GENERAL EDUCATION TEACHERS IN INCLUSIVE CLASSROOMS: A PHENOMENOLOGICAL STUDY

General Education teachers don’t have exceedingly specialized capabilities in special education. We don’t have much encounters in an inclusive classroom. Not continuously, but regularly, it appears that teachers feel unequal to the errand of educating students with special needs. This study used a phenomenological approach, which explains how people interpret their lived experiences with a concept or phenomenon (Creswell, 2020). The objective of a phenomenological investigation is to understand and explain an event from the point of view of the participants. Many professionals in the literature express concerns about whether full inclusion is appropriate for all students with disabilities and emphasize the importance of maintaining a continuum of services. Supporters for a continuum of services for students with disabilities cite two main reasons. First, they believe there is an inadequate research base to advocate such a drastic change to the current educational system believes, the research evidence on the relative efficacy of one special education service delivery model over another is scarce, methodologically flawed, and inconclusive. A number of recommendations for future studies emerged from the data. This study was restricted to fifteen elementary general education classroom teachers from Davao City The first recommendation would be to expand this study’s sample size and the geographic area of the participants. Another recommendation would be to study the perspectives of participants not included in this study: middle and high school teachers, specials teachers, and special education teachers. KEYWORDS: Implicit Strategies, Elementary General Education Teachers, Inclusive Classrooms, A Phenomenological Study

Genetic Variation and Stroke Recovery: The STRONG Study.

Genetic association studies can reveal biology and treatment targets but have received limited attention for stroke recovery. STRONG (Stroke, Stress, Rehabilitation, and Genetics) was a prospective, longitudinal (1-year), genetic study in adults with stroke at 28 US stroke centers. The primary aim was to examine the association that candidate genetic variants have with (1) motor/functional outcomes and (2) stress-related outcomes. For motor/functional end points, 3 candidate gene variants (ApoE ε4, BDNF [brain-derived neurotrophic factor], and a dopamine polygenic score) were analyzed for associations with change in grip strength (3 months-baseline), function (3-month Stroke Impact Scale-Activities of Daily Living), mood (3-month Patient Health Questionnaire-8), and cognition (12-month telephone-Montreal Cognitive Assessment). For stress-related outcomes, 7 variants (serotonin transporter gene-linked promoter region, ACE [angiotensin-converting enzyme], oxytocin receptor, FKBP5 [FKBP prolyl isomerase 5], FAAH [fatty acid amide hydrolase], BDNF, and COMT [catechol-O-methyltransferase]) were assessed for associations with posttraumatic stress disorder ([PTSD]; PTSD Primary Care Scale) and depression (Patient Health Questionnaire-8) at 6 and 12 months; stress-related genes were examined as a function of poststroke stress level. Statistical models (linear, negative binomial, or Poisson regression) were based on response variable distribution; all included stroke severity, age, sex, and ancestry as covariates. Stroke subtype was explored secondarily. Data were Holm-Bonferroni corrected. A secondary replication analysis tested whether the rs1842681 polymorphism (identified in the GISCOME study [Genetics of Ischaemic Stroke Functional Outcome]) was related to 3-month modified Rankin Scale score in STRONG. The 763 enrollees were 63.1±14.9 (mean±SD) years of age, with a median initial National Institutes of Health Stroke Scale score of 4 (interquartile range, 2-9); outcome data were available in n=515 at 3 months, n=500 at 6 months, and n=489 at 12 months. At 1 year poststroke, the rs6265 (BDNF) variant was associated with poorer cognition (0.9-point lower telephone-Montreal Cognitive Assessment score, P=1×10-5). For stress-related outcomes, rs4291 (ACE) and rs324420 (FAAH) were risk factors linking increased poststroke stress with higher 1-year depression and PTSD symptoms (P<0.05), while rs4680 (COMT) linked poststroke stress with lower 1-year depression and PTSD. Findings were unchanged when considering stroke subtype. STRONG replicated GISCOME: rs1842681 was associated with lower 3-month modified Rankin Scale score (P=3.2×10-5). This study identified genetic associations with cognitive function, depression, and PTSD 1 year poststroke. Genetic susceptibility to PTSD and depressive symptoms varied according to the amount of poststroke stress, underscoring the critical role of lived experiences in recovery. Together, the results suggest that genetic association studies provide insights into the biology of stroke recovery in humans.

Transnational grieving: The lived experience of Overseas Filipino Workers who lost their loved ones due to COVID-19

This study aimed to gain an insight into the lived experience of Overseas Filipino Workers (OFWs) who lost their family members due to COVID-19 during the lockdown in 2020. Five OFWs volunteered to participate in this study and underwent online semi-structured interviews. An interpretative phenomenological approach guided the data analysis, through which four major themes were derived: (1) experiencing the emotional strains of unexpected death while physically distant; (2) enduring the absence of traditional mourning rituals; (3) managing grief from a distance; and (4) finding closure through physical and symbolic presence. These findings shed light on how OFWs experienced loss and grief during the lockdown, as well as how they coped amidst the distance and eventually finding a degree of closure.

Sexual life experiences after myocardial infarction: A systematic review and synthesis of qualitative studies.

This study aims to systematically interpret and synthesize the data obtained from qualitative research about the sexual lives of individuals who have experienced myocardial infarction. A thorough literature review was conducted between November and December 2023 across five electronic databases: PubMed, Web of Science, CINAHL, EBSCO, and Science Direct Embase. This article includes 12 studies published in English since 2000 that have examined the sexual experiences of individuals who have experienced myocardial infarction. This research adhered to the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. We utilized the Critical Appraisal Skills Programme tool for qualitative research to evaluate the quality of all the papers included. To synthesize the data, the deductive and interpretation technique according to Sandelowski and Barroso's approach has been used. The sexual experiences of individuals who have experienced myocardial infarction were summarized under four main themes: changes in sexual life, barriers to engaging in sexual ıntercourse, an unmet need: ınformation, and sexuality as a part of routine care. Patients' expectations from counseling services regarding sexuality after MI are oriented towards these services providing more comprehensive information and incorporating multidisciplinary approaches. This demand clearly indicates the complex and multidimensional changes in sexual life after MI and underscores the necessity for healthcare professionals to play a more active role in this area. PROSPERO CRD42023483112.

A web-based video messaging intervention for suicide prevention in men: study protocol for a five-armed randomised controlled trial

BackgroundMore than 50% of people who die by suicide have not been in contact with formal mental health services. The rate of people who fly ‘under the radar’ of mental health services is higher among men than women, indicating a need to improve engagement strategies targeted towards men who experience suicidal thoughts and/or behaviours. In Australia, a range of mental health support services exist, designed specifically for men, yet, a substantial proportion of men do not use these services. The aim of this study is to evaluate whether a brief online video-based messaging intervention is an effective approach for encouraging men with suicidal thoughts and/or behaviours to engage with existing support services.MethodsInformed by a literature review, surveys, and consultation with men with a lived experience of suicidal thoughts and/or behaviours, we designed five video-based messages that will be used in this five-arm randomised controlled trial. A total of 380 (76 per arm) men aged 18 years or older with suicidal thoughts who are not currently accessing formal mental health services will be recruited online and randomly assigned to watch one of the five web-based video messages. After viewing the video, men will be presented with information about four existing Australian support services, along with links to these services. The primary outcome will be help-seeking, operationalised as a click on any one of the four support service links, immediately after viewing the video. Secondary outcomes include immediate self-reported help-seeking intentions in addition to self-reported use of the support services during a 1-week follow-up period. We will also use the Discrete Choice Experiment methodology to determine what aspects of support services (e.g. low cost, short appointment wait times) are most valued by this group of men.DiscussionThis study is the first to evaluate the effectiveness of a brief web-based video messaging intervention for promoting engagement with existing support services among men with suicidal thoughts who are not currently receiving formal help. If found to be effective, this would represent a scalable, cost-effective approach to promote help-seeking for this at-risk population. Limitations and strengths of this study design are discussed.

Improving assessment and management of suicide risk among people who inject drugs: A mixed methods study conducted at the Medically Supervised Injecting Centre, Sydney.

People who inject drugs are 13 times more likely to die by suicide than the general population. Guidelines for responding to risk in this population are limited. Harm reduction services attended by people who inject drugs require targeted strategies to address the complexities of suicide risk among this population. Co-design, engaging health professionals and people with lived experience informed the study. Mixed methods were used to understand the experience of managing suicide risk among clients attending the Medically Supervised Injecting Centre (MSIC) in Sydney. A survey was administered to assess staff confidence in managing risk. Focus groups were conducted with health professionals and MSIC clients to explore experiences of suicide management, response and opportunities for improvement. Half (N = 17) the MSIC staff surveyed reported over 10 years' experience working with this population. Confidence in managing suicide risk was low. Three key themes emerged from focus groups (N = 17): (i) Autonomy and the need to involve clients in the assessment process; (ii) Trust between clients and health professionals, and transparency in decision-making; and (iii) System barriers, described by health professionals as inadequate referral pathways for clients in distress, and by clients as negative experiences of care, including involuntary admission and not receiving medication (e.g. methadone). Revised assessment guidelines and a tailored safety plan were developed. These resources are also suitable for other alcohol and other drug services. The challenge in managing suicide risk in harm reduction services is balancing duty of care with staff-client relationships and client engagement.

Informing knowledge translation for selective dorsal rhizotomy: A survey of Australian clinicians and people with lived experience of cerebral palsy.

Selective dorsal rhizotomy (SDR) is a neurosurgical intervention used to reduce spasticity in children with cerebral palsy (CP). There is minimal relevant, evidence-based information available for Australian families and clinicians. This study aims to investigate the knowledge of people with lived experience and clinicians regarding SDR, including how they currently access information and what information they seek. Adults with CP, carers of children with CP and clinicians treating children with CP were invited to complete an online survey. Data regarding participant demographics, current knowledge and confidence in knowledge about CP and SDR, information source/s used and participants level of trust in these sources are presented as counts and percentages. Comparisons in knowledge between groups were analysed. A total of 114 surveys were completed: 63 clinicians, 48 carers, and 3 adults with CP. Eighty percent of clinicians were allied health professionals. People with lived experience were less confident in their knowledge about SDR compared to knowledge of CP (P < 0.001). Clinicians rated scientific research literature and the hospital team as the most useful and trustworthy information source. People with lived experience used a wider range of information sources including the internet, rating their community therapy team and other people with lived experience as the most useful. This study identified a lack of confidence in knowledge of SDR for people with lived experience, likely due to a gap in accessible and readable evidence-based information. While both groups differed in how they access information, there was agreement that greater information about SDR is needed.

“It’s like building a new person”: lived experience perspectives on eating disorder recovery processes

BackgroundDeeply engaging with the expertise of those who have experienced or supported someone with an eating disorder can add to a growing body of knowledge about recovery processes. In this qualitative study, we sought to explore and generate nuanced understandings of recovery experiences of people with a lived ED experience (first hand or as a caregiver) who were working as mentors in the field. To do this, we focused on changes that occur in personality, traits, and interests over the course of an eating disorder and into recovery.MethodWe conducted semi-structured interviews with 27 people with an eating disorder history, either through personal lived experience (n = 14) or as a caregiver of a loved one with an eating disorder (n = 13). We undertook a reflexive thematic analysis of the data through a critical realist lens.ResultsWe developed three themes, which illustrate the nonlinearity, relationality, and systemically linked nature of changes across experiences of having and recovering from an eating disorder. The first theme focuses on expansion; participants described how their worlds got bigger as they explored who they were becoming and discovered new ways of living in line with their values. The second theme emphasizes the balance between support and autonomy participants described as important for enabling change to occur across the recovery process. The last theme highlights the ways in which changes throughout the recovery process entwined with systemic factors, including actively pushing back against diet culture and weight stigma.ConclusionsParticipants’ stories highlight interactions between individual, relational, and societal shifts that occur throughout the course of an ED and into recovery. They support ongoing calls to orient to ED recovery as situated within a broader social milieu, which invites us to build supportive environments to enable expansion and flourishing.

‘You come as a human being…’: exploring sense of equality in arts interventions through an ethnographic study of Shared Reading

Research shows that the arts hold a particular potential for promoting health, well-being and social inclusion for vulnerable people. However, the use and consumption of the arts tend to be...

A Video Data Analysis of Pet Theft Incidents: An Examination of Offense Form, Situational Dynamics, & Offender Characteristics

ABSTRACT Pet theft is a type of property crime, but pet-owner relationships include emotional dimensions and life experiences that can compound their loss far beyond property value. Their bondedness with humans includes companionship as well as healthy lifestyle and mental wellness benefits, which are abruptly halted at junctures of pet loss. Though pets are stolen for various motives (e.g. ransom, reward, resale, or breeding), this crime form has received little research attention from academic criminology and criminal justice. Toward building a line of inquiry, this paper empirically explores the phenomena of “dognapping” as dogs are the most frequently stolen pet and the only pet for which there is a database large enough for meaningful exploration. Content analysis of online posts and web-based video data (Twitter/X1 posts, YouTube videos, and social media websites dedicated to missing and stolen pets) enabled a delineation of dog theft forms, offense dynamics, and offender characteristics. Findings regarding residential and commercial dog theft center discussion on situational crime prevention implications and additional research opportunities to further evidence and explore this relatively disregarded crime.

Lived experiences of village-based patients with chronic kidney disease receiving haemodialysis at Mirpur, Azad Kashmir, Pakistan: a transcendental phenomenology study protocol

BackgroundChronic kidney disease (CKD) is one of the major health issues in Pakistan, exerting notable effects on both the physical and mental well-being of individuals undergoing haemodialysis. Of particular concern...

Curriculum as ‘folding’ democratic practice: Integrating Deleuzian and Deweyan philosophies with the lived experiences of English teachers

AbstractThis article advocates the revision of the English as an Additional Language (EAL) Curriculum in Australia into a “curriculum as ‘folding’ democratic practice”, a concept deeply informed by the lived experiences of sixteen teachers of English from multilingual backgrounds. Using hermeneutic phenomenology and narrative inquiry, this study explores how these educators leverage their personal and professional lived experiences to transcend the limitations of a curriculum dominated by Australian Standard English. These narratives highlight the adaptation of the curriculum through ethical engagements with learners’ diverse needs, embodying democratic and pluralistic approaches. Drawing on Gilles Deleuze’s (1993) concepts of the “fold” and “molecular possibilities” and John Dewey’s “democratic education” (1916), the research illustrates the potential of a responsive and inclusive curriculum that fosters intercultural capabilities in superdiverse classrooms. This study advocates an EAL curriculum that not only imparts linguistic skills but also prepares learners for meaningful participation in a globally interconnected society, extending the scope of English language education and teacher capabilities in Australia and beyond. The research highlights broader implications for other subject-related curricula, suggesting principles that could foster inclusivity and intercultural understanding.

Early-life maturation of the somatosensory cortex: sensory experience and beyond

Early life experiences shape physical and behavioral outcomes throughout lifetime. Sensory circuits are especially susceptible to environmental and physiological changes during development. However, the impact of different types of early life experience are often evaluated in isolation. In this mini review, we discuss the specific effects of postnatal sensory experience, sleep, social isolation, and substance exposure on barrel cortex development. Considering these concurrent factors will improve understanding of the etiology of atypical sensory perception in many neuropsychiatric and neurodevelopmental disorders.

Prioritisation of clinical trial learning needs of musculoskeletal researchers: an inter-disciplinary modified Delphi study by the Australia & New Zealand musculoskeletal clinical trials network.

There is a need to increase the capacity and capability of musculoskeletal researchers to design, conduct, and report high-quality clinical trials. The objective of this study was to identify and prioritise clinical trial learning needs of musculoskeletal researchers in Australia and Aotearoa New Zealand. Findings will be used to inform development of an e-learning musculoskeletal clinical trials course. A two-round online modified Delphi study was conducted with an inter-disciplinary panel of musculoskeletal researchers from Australia and Aotearoa New Zealand, representing various career stages and roles, including clinician researchers and consumers with lived experience of musculoskeletal conditions. Round 1 involved panellists nominating 3-10 topics about musculoskeletal trial design and conduct that they believe would be important to include in an e-learning course about musculoskeletal clinical trials. Topics were synthesised and refined. Round 2 asked panellists to rate the importance of all topics (very important, important, not important), as well as select and rank their top 10 most important topics. A rank score was calculated whereby higher scores reflect higher rankings by panellists. Round 1 was completed by 121 panellists and generated 555 individual topics describing their musculoskeletal trial learning needs. These statements were grouped into 37 unique topics for Round 2, which was completed by 104 panellists. The topics ranked as most important were: (1) defining a meaningful research question (rank score 560, 74% of panellists rated topic as very important); (2) choosing the most appropriate trial design (rank score 410, 73% rated as very important); (3) involving consumers in trial design through to dissemination (rank score 302, 62% rated as very important); (4) bias in musculoskeletal trials and how to minimise it (rank score 299, 70% rated as very important); and (5) choosing the most appropriate control/comparator group (rank score 265, 65% rated as very important). This modified Delphi study generated a ranked list of clinical trial learning needs of musculoskeletal researchers. Findings can inform training courses and professional development to improve researcher capabilities and enhance the quality and conduct of musculoskeletal clinical trials.

ACCENTUATING THE HEART OF TEACHING: THE LIVED EXPERIENCES OF STUDENT-CATECHISTS

For more than a decade, St. Mary’s College of Tagum, Inc., Philippines, has been actively involved in the community through the catechetical ministry. It is henceforth, the purpose of this study to accentuate the heart of teaching by exploring the lived experiences of the student-catechists. This employed qualitative research specifically phenomenological design. The researchers used in-depth interviews and focus group discussions. The participants of the study were chosen through purposive sampling wherein participants were selected based on some pre-inclusion criteria. The participants were student-catechists from our school. The responses were gathered through audio recordings. Coding and thematic analysis of participants’ responses were used to extract answers. Results of the investigation revealed that student-catechists view catechism as inspires students and exemplifying good role models. It gives positive experiences by students’ constructive responses, co-catechists shared experiences, and learning from interactive activities. The challenges faced include lack of provision for instructional materials, attitude towards catechism, lack of knowledge, and difficulty in managing responsibilities. Despite these factors, participants learned to cope by lesson planning, proper classroom management and respecting beliefs of others. The results of this study imply that there is a sense of fulfilment on being a student catechist. KEYWORDS: Education, student catechism, college students, phenomenology, coding, and thematic analysis, Philippines