Lived Experience Research Articles

Stigmatizing intimate relationships in schizophrenia: a study comparing mental health professionals, health students and the general population

Background Discrimination in intimate relationships (IR) is frequently reported among persons with schizophrenia. Despite ongoing effort of international organizations to combat mental illness stigma, there remain a limited understanding of specific IR-related stereotypes. Aims The study aimed to i) identify the stereotypes related to IR of persons with schizophrenia held by Mental Health Professionals (MHP), health students and the general population, and ii) explore the effects of several factors associated with these stereotypes. Methods This study used a mixed-methods approach. A survey developed collaboratively with persons with lived experience of mental health conditions (PWLE) was disseminated among MHP, health students and the general population. Results The majority of the nine IR-related stereotypes previously identified by PWLE were endorsed by the participants (N = 532). PWLE were perceived as particularly incompetent in the domain of IR (e.g. to achieve couple project). Stereotypes endorsement varied among the groups. Continuum beliefs, perceived similarities and recovery beliefs were negatively associated with stereotype endorsement. Conclusions The general population, MHP and health students endorsed several stereotypes regarding IR of persons with schizophrenia. The results provide support for the role of theoretical beliefs in IR stigmatization, suggesting they may be relevant targets for evidence-based stigma reduction programs.

Lived experiences of students with blindness in Orientation and Mobility (O&M) skills at Haramaya University, Ethiopia: A phenomenological study

Orientation involves understanding or comprehending the location of the desired destination, while mobility pertains to safe and efficient movement within the environment. This study examines the life experiences of students with blindness at Haramaya University, Ethiopia, in learning and using Orientation and Mobility (O&M) skills. The research used a descriptive phenomenological design, with five participants purposively chosen based on their severity of vision loss and willingness. Based on the findings, three main themes emerged: formal learning and use, informal learning and use, and absence of learning and non-use. The study recommends appropriate teaching aids and techniques to improve O&M skills for individuals with blindness and to enhance the lives of individuals with blindness.

Wider health needs in attention deficit hyperactivity disorder from lived and professional experience: a qualitative framework analysis

ObjectivesThis study aimed to explore the perspectives of people with attention deficit hyperactivity disorder (ADHD), their supporters and primary care professionals (PCPs), on the wider physical and mental health needs...

Infrastructures of support: Australian young people’s perspectives on caring during the pandemic and future disability and care policy reform

ABSTRACT Today’s young people are critical stakeholders in the future of social care policy and services, but their voices and perspectives are often overlooked in public debate and deliberation on disability services, aged care, and support for family carers. This article reports on a pilot project involving focus groups with young people in the Australian Capital Territory, Australia. Participants included young people with caring roles for family members with disability and chronic illness and young people without lived experience of disability or care. The article explores how young people’s understandings of care were profoundly shaped by their experiences during the COVID-19 pandemic. Lockdowns, health concerns and media coverage heightened their awareness of the diverse ways in which people support each other in families and communities and the systemic issues afflicting the formal care sector. The article draws on the concept of care as critical social and economic infrastructure to frame participants’ proposals for future reform of policy and services. The findings indicate that young people both with and without current care roles want to see significantly more investment in the care and support sectors, and these groups view meaningful engagement with service users as key to improving access to needed supports.

Homophily in Interfaith Marriages in Israel Between Jewish Israeli Men and Arab Israeli Women

This study examines the perspectives of Israeli-Jewish men who are married to Israeli-Arab women. Given religious, ethnic, and political tensions and challenges, romantic relationships between Israeli Jews and Israeli Arabs are not common. The homophilic tendency is a common model used to choose a partner based on religious, social, linguistic and educational similarities. This study utilized interpretive phenomenological analysis approach to focus on a unique and rather rare phenomenon in Israel to understand the lived experiences and coping mechanisms of Jewish men who married Christian or Muslim women in Israel. Fifteen Israeli men married to Arab Muslim or Christian Israeli women were included interviewed. Based on the analysis of the findings, several themes were identified which describe how participants utilize a pragmatic approach to bridge family, social, religious and political tensions. These themes strengthen recent studies, which found a certain degree of flexibility toward homophily among Jews and Arabs in Israel.

Negotiations and reconciliations in the first year of teaching

This study investigates the lived experiences and developing identities of three secondary first-year teachers, exploring the practices each employed to reconcile expectations of teaching with their realities. Authors present distinct narratives synthesized from weekly reflections and interviews, identifying factors that supported new teacher reconciliation including a strong connection to community, healthy social emotional skills, and the recalibration of the role of curriculum. This study advocates for teacher preparation programs to recognize areas of misaligned expectations and provide support for new teachers in the construction of realistic views of teaching as essential to developing teacher identity and impacting retention.

Trust, entrusting and the role of trustworthiness for adult survivors of child sexual abuse

Background Survivors of Child Sexual Abuse (CSA) are reported to have difficulties in trusting. Yet no previous study investigating CSA survivors’ subjective experiences of trust exists and there is a paucity of clinical research into constructs and definitions of “trust.” Aims To use a phenomenological lens to investigate CSA survivors’ descriptions of trust relationships and trustworthy others by privileging their subjective experience. To better understand how trust can be built within therapeutic relationships. Methods A qualitative methodology using Interpretative Phenomenological Analysis was conducted within the survivor-research paradigm. The researcher was a person with lived experience of CSA who co-produced the study with CSA survivor advisors and co-constructed interviews with 17 adult CSA survivors. Results Findings present a “Survivor Trust Enactment Model” that delineates the process of building/repairing relational trust and advancing “transactional trust.” Trust is portrayed as nuanced and formed across and according to context, including the demarcation of generalised and relational trust. The findings emphasise that trustees’ trustworthiness is key to building trust which challenges assumptions that survivors are deficient in trust. Conclusion The foregrounding of subjective trust experiences challenges diagnostic and clinical views on trust deficiency in adult CSA survivors. The study develops clinical constructs of trust, considers implications for clinical practice, and indicates areas for further research into trust dynamics in therapeutic relationships.

Contested and unheard voices within the asylum framework – participation challenges of unaccompanied minors in Germany and Norway

ABSTRACT The construction of unaccompanied minor asylum seekers (UMAs) as a vulnerable group places UMAs into a social category that the welfare state is required to deal with. In general, welfare states have the choice of addressing UMAs’ needs, either under the scope of the asylum system combined with special provisions, or to place them on a separate track and thus exclude them from ordinary migration framework. This article takes a comparative analysis of the Norwegian (migration track) and German (separate track) asylum and welfare system on how the regulations available for UMAs intersect and how these procedures shape the lived experiences of UMAs and their options for participation in their decisions on their asylum cases, as well as in their everyday lives. When discussing three characteristics of UMA status (their position as protection seeker, as under age, as unaccompanied), we will especially focus on participation rights in how regulations regarding the age assessment, asylum procedure, residence status, legal representation and welfare provisions are applied in practice. To this end, we will highlight experiences of UMA gathered through interviews in Norway and Germany.

Perceptions of patients and healthcare providers regarding barriers and enablers of HIV anti-retroviral therapy among women at a regional hospital in Ghana: implications for national HIV/AIDS control.

The Acquired Immune Deficiency Syndrome (AIDS) pandemic has created a lot of devastation over the last four decades and continues to be a public health threat. Anti-retroviral treatment (ART), a group of medications that people who have been diagnosed with the Human Immunodeficiency Virus (HIV) infection take, has been shown to be efficacious and has significantly improved the fight against the disease. In Ghana, women carry a higher prevalence and incidence of HIV. The study's objectives were to understand the experiences of women living with HIV/AIDS on ART and determine the barriers and enablers for ART uptake from the perspective of both the females living with HIV and their healthcare providers in the Upper East Regional Hospital of Ghana. This was a qualitative study that used interviews to acquire data from women living with HIV on the perceived barriers and enablers for ART. The Upper East Regional Hospital in Ghana was the study site. We used a phenomenological approach to explore the lived experiences, perceptions, and meanings associated with ART among women. We collected data until we reached thematic saturation, interviewing a total of sixteen women living with HIV. We conducted a focus group discussion with nine healthcare workers providing care at the ART clinic. Data were analysed using thematic analysis. Women living with HIV and their healthcare providers viewed an environment that provided encouragement and support from healthcare workers and patients' relatives, the ability to conceal HIV status, peer counselling, and the perceived benefits of therapy as enablers of ART uptake and medication adherence. The following were barriers to ART uptake and adherence: ill health, forgetfulness, long distances to ART clinics, cultural and spiritual beliefs, and fear of stigma. Enablers of ART uptake should be expanded upon and encouraged so that women living with HIV/AIDS can access drugs in a timely and stress-free manner. On the other hand, the barriers identified can be addressed through education, the expansion of healthcare infrastructure, and the economic empowerment of women.

Intent vs Reality: Dehumanization in the South African Corporate Landscape

Thirty years after apartheid’s abolition and the ascension of a new democratic leadership, South Africa continues to grapple with the discriminatory legacy of apartheid. Measures introduced by the post-apartheid government to combat historical marginalization, including legislative initiatives like affirmative action laws and diversity management policies, encounter inherent structural barriers within South African organizations shaped by prevailing cultural norms. Despite the legal framework in place, black employees often endure dehumanizing treatment, finding themselves sidelined from decision-making channels and lacking access to avenues for career advancement and professional development. This essay aims to better understand the lived experiences of South African workplace employees through the lens of organizational dehumanization. This work underscores the urgent need to reimagine transformation efforts in South Africa, moving beyond numerical representation toward a more inclusive work environment that promotes genuine empowerment. It emphasizes the importance of developing holistic diversity management strategies, implementing effective mentorship and sponsorship programs, and providing opportunities for meaningful participation and decision-making by black employees. Such an approach will ensure that legislative intentions are translated into practical workplace realities, ultimately fostering true equality and empowerment.

A Model of Care for Chronic Brain Injury

There is growing evidence that long-term outcomes after traumatic brain injury (TBI) are more dynamic than stable. People continue to change, both improving and declining, many years post-injury. Research, practice and medical education have not yet fully embraced the implications of TBI as a chronic, dynamic condition. In 2020, the National Institute on Disability Independent Living and Rehabilitation Research funded the BeHEALTHY project to develop a model for long-term support of persons with chronic brain injury. Based on initial reviews of the available evidence and expert input from researchers, clinicians, and persons with lived experience, the BeHEALTHY model was proposed. Among existing chronic disease treatment models, Wagner's Chronic Care Model was selected as a starting point, with several critical refinements. The BeHEALTHY model endorses a person-centered approach, recognizing the individual with brain injury, and their social support system, as the primary source of goals in care planning. The model also acknowledges the critical importance of self-management and the need for healthcare programs to actively promote self-direction by the person using their social supports. The model also recognizes that outcomes are not determined solely by the person and the injury incurred, but also by the environment in which a person lives and recovers. The importance of integrating healthcare with community resources is underscored by embracing environmental influences as a shared responsibility of the community and the healthcare system. This article recounts the impetus for developing the BeHEALTHY model, and describes those it is intended to serve, structural features, and core components.

Transforming humanitarian aid through lived experience

Transforming humanitarian aid through lived experience

New insights into the contributions of playfulness to dealing with stress at work: Correlates of self- and peer-rated playfulness and coping strategies

Playfulness is an individual difference variable that enables people to experience and (re)frame situations of everyday life as interesting, entertaining, and/or stimulating. This definition is consistent with a structural model that includes four different playfulness facets: other-directed, lighthearted, intellectual, and whimsical playfulness. In the work context, playfulness has been shown to be related with various outcomes such as innovative behavior or intrinsic goals. We tested adult playfulness' associations with coping strategies employed at work and whether these coping strategies help to transfer the expected association between playfulness and employees' life satisfaction. Study 1 (N = 185; nursery school trainees) provides support for our hypothesis that playfulness is associated with more positive and less negative coping strategies when being confronted with general and work-specific stress. Study 2 (N = 355; employees from various working fields) confirms our results from study 1 by demonstrating that playfulness is related to adaptively coping with work stress. Further, study 2 shows that some playfulness facets were positively related to life satisfaction and that these associations were transferred by coping less negatively with work stress and, to some degree, also by utilizing positive control strategies. Overall, our findings indicate that adults' playfulness is of importance for coping with stress at work and to further explain employees’ life-satisfaction. Directions for future research on playfulness in the work place are discussed.

‘Thrown at twins’ - A qualitative study exploring the lived experience of Australian osteopaths who regularly treat paediatric patients

Backgroundand purpose: Little is known about the training and experience of osteopaths who treat paediatric patients, and graduates report feeling unprepared for this aspect of practice. The purpose of this study was to investigate the lived experience of Australian osteopaths who regularly treat these patients, in order to better understand their individual educational pathways and their management of this population. Materials and methodsOsteopaths who reported regularly treating paediatric patients were recruited through the Osteopathy Research and Innovation Network (ORION) national practice-based network. Semi-structured interviews were completed, transcribed and thematically analysed using the principles of Descriptive Phenomenology to compile qualitative data. ResultsTen osteopaths were interviewed, whose age ranged from 33 to 71 years and with 15–46 years of clinical experience. Proportion of paediatric patients ranged from 20 to 90 % of participants’ caseload according to self-report. Seven themes were identified that reflected the lived experience of treating paediatric patients: 1) Variable pathways to practice, 2) Challenges and rewards, 3) Scope of practice, 4) Team-based care, 5) Importance of entry-level skills, 6) Family-centred care, and 7) Success. ConclusionThe study found a diversity of educational pathways, that paediatric practice was highly rewarding, the scope of practice was based on diagnostic skills and experience, the practitioners had extensive team-based professional networks, practice reflected a family-centred care model, and personal measures of success were multifactorial. These results give insight into this area of practice to guide further research.

Understanding employee experiences of developing younger onset dementia within the workplace: A scoping review.

There is limited information focussing on the perspectives of persons with younger onset dementia (YOD) in employment. This poses challenges for supporting this demographic within the workplace and during their transition to retirement. The aim of this scoping review is to address the identified need to ascertain what is known about the perspectives of employees with YOD. Records were included if they: considered working-aged persons who received a diagnosis of YOD whilst employed or soon after ceasing employment; considered the perspective of the person with YOD; and were published in English. Four databases (CINAHL, PubMed, Embase, Cochrane Library) were systematically searched, and grey literature was sought using the Google Scholar search engine. Using PRISMA-ScR guidelines, two reviewers screened the title/abstract then full text of identified documents. Disagreements were resolved with a third reviewer. Research papers were narratively synthesised, thematically analysed, and critically appraised. Fourteen peer-reviewed research papers, and nineteen grey literature items were included in the review, with research papers found to be of reasonably high methodological quality. Five themes were identified, describing the experiences of employees with YOD: (1) Trying to manage difficulties prior to diagnosis; (2) Disclosure at the point of diagnosis; (3) Reasonable adjustments; (4) Employment cessation; and (5) Regaining meaningful roles following retirement. Findings revealed evidence for an emerging understanding of the lived experience of developing YOD within the workplace; however, further research is needed regarding the capabilities and support needs for persons with YOD to influence workplace policies and practices.

Identities, power and policing of young men in Mathare and Kaptembwo

ABSTRACT This paper contributes to our understanding of how identities are exploited and the impact on policing. Through empirical data from Mathare and Kaptembwo informal settlements, I analyse how economic status, gender, and age overlap to shape and construct young men experiences with policing. To do this, I locate social categories and identities within a broader social framing that attends to power, generational hierarchy and context. Further, I interrogate the interconnections between multiple formations of oppression related to crime, criminal justice, and conceptualisations of deviance. I take a holistic approach to analysing and thinking through how authority, domination, and power coalesce in lived human experiences. To comprehend how young men legitimised and resisted different forms of control and regulation imposed by the elders, police and Community Policing Committee, I argue that identities are sites of power struggles. They reconfigure power and relationships, affecting mentalities in policing. Understanding this helps us make sense of the experiences of young men living at the intersections of social identities, illuminate the systems that maintain power hierarchies and inform interactions with the different policing actors.

Not well enough: acceleration, performance and psychologization in young people’s lives

ABSTRACT The pronounced increase in the number of young people struggling with mental health and wellbeing continues to puzzle researchers, politicians and practitioners. Discussions around this seem to fluctuate between individualizing understandings of the problem matter and more structural, institutional and cultural ones, calling for research exploring the role of the latter. In this paper, we present analyses of how broader societal frameworks linked to acceleration, performance and psychologization affect the wellbeing of young people. Based on a longitudinal qualitative study in Denmark with 37 young men and women between the ages of 16 and 24 struggling with wellbeing, this paper unfolds structural, cultural and institutional influences on mental health issues experienced by young people. The analyses are produced using a social-analytical lens of ‘diagnosis of the times’ to explore how young people’s subjective everyday life experiences of wellbeing and wellbeing struggles must be understood as interlinked with broader societal frameworks and expectations.

Contextualising mental health: interdisciplinary contributions to a new model for tackling social differences and inequalities in mental healthcare

ABSTRACT Many classical approaches in the area of phenomenological pscyhopathology focus on structures of lived experience of mental illness and overlook the role social context plays in the formation of lived experiences. The paper addresses this issue and contributes to recent research which has pointed out that there is a need for an approach to mental health which investigates the role of context in shaping lived experiences. We propose a conception of contextuality (or situatedness) which we develop in terms of two main characteristics: intersectionality and social relationality of the human condition. We take context to be shaped by social interdependence and by the intersection of multiple factors including gender, race, ethnicity, class, socio-economic status and power relations. We develop this analysis in relation to substance misuse, refer to, and compare, certain case studies and perspectives from Brazil to illustrate our approach which can, however, be applied to other areas of mental health. We suggest that the proposed contextual approach is crucial for an in-depth understanding of psychopathology from a phenomenological perspective and in relation to contemporary ethico-political issues concerning social differences and inequalities in mental health.

Using WindTunneling to document emergent knowledge to explore common perceptions of well‐being

AbstractThe purpose of this paper is to discuss using WindTunneling to document emergent knowledge to explore common perceptions of well‐being. WindTunneling is a systemic research methodology to help groups navigate complex issues. In 2022, I adapted WindTunneling to document sensory‐based emergent knowledge from 978 international participants exploring 52 somatic movement activities designed to promote well‐being. Well‐being is a complex subjective condition that is difficult to measure and maintain the richness of diverse perspectives. Discovering common perceptions of well‐being using WindTunneling would partially substantiate the efficacy of movement as a well‐being intervention in context specific situations. If successful, this research design would add to the rigor of WindTunneling as a way to develop a holistic understanding of how participants perceive well‐being in relationship to their lived experience. Developing WindTunneling methodology to meet appropriate qualitative research standards would have practical significance to researchers working to measure the subjective dimension of well‐being.

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.