Lived Experiences Of People Research Articles

"All the horrible emotions have passed, I still remained, and I was safe": A qualitative study of Lesbian and Gay people's lived experience of completing a full Dialectical Behaviour Therapy programme.

Lesbian and Gay people (LGP) experience higher rates of mental health difficulties, including self-harm, suicidal behaviours, as well as inequalities in health care, than their heterosexual peers. Dialectical Behaviour Therapy (DBT) is an evidence-based treatment for self-harm and suicidal behaviours, though there is little research on LGP's experiences of DBT. This research aims to explore LGP's experiences of completing a full DBT programme. A qualitative design with semi-structured individual interviews was utilised. The results were analysed using Interpretative Phenomenological Analysis. Six lesbian and two gay adults, aged between 22 and 47 years, living in the United Kingdom took part. All participants had completed a full programme of DBT within the 2 years prior to the interview. Four superordinate themes emerged from the data: (1) The DBT journey; (2) Connections and Sense of Community during DBT; (3) Sexuality both visible and invisible in DBT and (4) A Gender, Sexuality and Relationship Diverse (GSRD) affirmative future for DBT. Several clinical implications are suggested to improve DBT for LGP, for example to consider having other LGP within DBT groups, to create a more GSRD-affirming DBT (changes to the DBT manual, DBT therapists, DBT programme and physical DBT space), to adapt DBT techniques to manage sexuality-related difficulties and to adopt a GSRD-centric framework. Overall, DBT appears to be beneficial for LGP.

The lived experience of patients with bipolar disorder with adapting their lifestyle to their condition

BackgroundAn important element of self-management strategies for people with bipolar disorder is adapting their lifestyle to their condition, since this improves their quality of life. However, not all people with bipolar disorder succeed in lifestyle adaptation. Knowledge about their lived experience with adaptation would enhance understanding about how healthcare providers optimize support. Research questionWhat is the lived experience of people with bipolar disorder with adapting their lifestyle to their condition? MethodA qualitative, descriptive phenomenological design was used. Individual, open interviews were conducted with 16 people with bipolar disorder. The data were analyzed according to the seven-stage process by Colaizzi. FindingsThree main themes were identified: (1) struggling to adapt lifestyle; (2) mixed feelings about lifestyle adaptation; and (3) supporting lifestyle adaptation. ConclusionParticipants reported that adapting their lifestyle to bipolar disorder is a struggle. Adaptation is influenced by factors such as the fluctuating nature of the disorder and differing levels of experiential knowledge and can evoke both positive and negative feelings. Lifestyle adaptation is also interrelated with other strategies for staying well, such as accepting the diagnosis and being open with others. It can be enhanced by support from other people and by making use of practical tools. RecommendationsHealthcare providers should support people adapting their lifestyle to bipolar disorder by being attentive to the interrelatedness of lifestyle aspects and other strategies for staying well with bipolar disorder.

The city at ear level - Qualifying the role of soft data in soundscape development and research

The ISO/TS 12913-series on Soundscape, has the potential to exert significant influence on urban life, impacting infrastructural development, sustainability practices, and overall quality of life. This paper underscores the imperative of exploring the city's soundscape at ear-level, emphasizing a perspective of sonic citizenship wherein the individual's lived experience takes precedence. Such a perspective focuses on an understanding of soundscapes as dynamic attuning relations, including how multisensory atmospheres shaped by non-acoustic factors influence our assessment of soundscapes. Citizens engage in negotiating, performing, and sharing responsibility for these soundscapes. We propose how urban interventions and experiments can help glean finer insights into people's lived experiences and capture such nuanced, often subconscious aspects when developing urban soundscapes. These initiatives aim to motivate and empower a diverse spectrum of citizens, to engage in co-creating the urban development process. We argue that fostering such participatory activities enhances awareness and underscores the urgency of high-quality soundscapes in collaboration with relevant authorities and urban stakeholders. Additionally, these interventions yield soft data elucidating cultural and social practices, enriching our understanding of the experiential dimensions of soundscapes and informing future urban development.

In dialogue with the body: a phenomenological exploration of the interrelationship between people who use AAC and their AAC devices

This paper explores the intricate relationship between people who use Augmentative and Alternative Communication (AAC) and their AAC devices. Drawing upon insights from phenomenology, I conducted a modified systematic review to explore the enduring phenomenon of low AAC device adoption and as a means to unravel the moments of embodiment and disembodiment experienced by people who use AAC with their devices. The discussion begins with an introduction to phenomenology as a philosophical inquiry and the guiding principles I employed to explore the phenomenon, namely, parte extra parte and object embodiment. Subsequently, I analyze the hegemony of a device-centric approach within the AAC landscape and delve into the first-person experiences of people who use AAC in living with their devices. Lastly, I discuss the embodiment and disembodiment of people who use AAC with their devices, conceptualize the interrelationship between them, and provide future directions for a more holistic and participatory AAC development and investigation that centers on the lived experiences of people who use AAC.

Impact of Contextual Factors on the Perceived Participation of People With Multiple Sclerosis and Gait Impairment Using Mobility Assistive Devices: A Qualitative Analysis.

People with multiple sclerosis and gait impairment are particularly susceptible to facing restrictions in their participation. This study aims to investigate (a) which contextual factors within the framework of the International Classification of Functioning, Disability and Health (ICF) are relevant for participation from the perspective of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices, and (b) how these contextual factors shape the subjective facets of participation, including a sense of connection, efficacy and meaning, based on the social identity approach to health and well-being. We conducted a qualitative analysis on data gathered from four online focus group interviews, each involving four to six people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices (totalling N = 19), and 12 individual online interviews conducted with participants from the focus group interviews. The analysis followed the qualitative content analysis according to Kuckartz. Mobility assistive devices such as walkers, manual wheelchairs and electric wheelchairs/scooters were seen as facilitators that enabled participation in various life situations and enhanced a sense of efficacy by promoting independence. Challenges were encountered in relation to architectural barriers, pathways, weather conditions, public transportation and the lack of integral accessibility to services and systems. Although instrumental support could ease participation, it was also associated with an impaired sense of efficacy. Attitudes, particularly developing an understanding of the experiences of people with multiple sclerosis and gait impairment from others' perspectives, were considered important but often lacking, and discriminatory attitudes were experienced. On the level of personal factors, acceptance of both the mobility assistive devices and the disease itself were seen as facilitators for maintaining involvement in life situations. This study extends the existing literature by shedding light on the interconnectedness of contextual factors within the ICF and various facets of perceived participation, including a sense of connection, efficacy and meaning. These findings provide valuable insights for stakeholders such as urban planners and policymakers in developing inclusive environments that enhance the overall quality of participation for people with multiple sclerosis and gait impairment. This study reports on the lived experiences of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices. The research team stood in close exchange with project members of the German Multiple Sclerosis Society Lower Saxony, a group representing the interests of people with multiple sclerosis, to design and conduct the focus group interviews. The results from the focus group interviews were the basis for the design of a participatory future workshop in which people with multiple sclerosis and stakeholders involved in the healthcare process collaboratively developed recommendations for improving the provision of mobility assistive devices. German Clinical Trials Register number: DRKS00025532.

I say a little prayer for me: Poetry as spiritual self‐care in the ethnographic field

AbstractHow do we make sense of our place in the field as researchers and as sexual, spiritual beings? Ethnographic fieldwork is central to several disciplines, including geography. It involves the researcher encountering and gathering stories and meanings through interaction with people's lived experiences in settings that are often not the researcher's own. Although rarely strain‐free, fieldwork is seen as a transformative experience, both from the personal and the academic point of view. This paper, situated at the intersection of geography, queer/ing practices, and ethnographic methodology, explores poetry as a form of self‐care in the field. In recent years, poetry has emerged as a creative and productive mode of representation and (co‐)interpretation of qualitative data. Based on my own spiritual experience(s) while conducting fieldwork in Spain, I consider prayer cards as a poetic form and a means through which issues of self‐care and spiritual self‐preservation are made visible, particularly when experienced within a social environment that is hostile to LGBTQ+ lived experiences of faith.

Reclaiming the radical roots of adult education: Toward community‐based anti‐racism education through participatory action research

AbstractIn this article, we revisit the radical roots of adult education for social change by developing community‐based anti‐racism education through participatory action research. Drawing on critical race theory (CRT) as its theoretical framework, we incorporate principles of participatory action research (PAR) to conceptualize community‐based anti‐racism education where community members and academics collaborate as equal partners throughout the process. Three key features emerged out of this analysis to characterize this approach: using people's lived experiences as an entry point to understand contemporary forms of racism, underscoring the importance of participation at the grassroots level, and prioritizing an action‐oriented feature of community‐based anti‐racism education. By combining synergies between CRT and PAR, this approach has the potential to contribute to facilitating collaborative, equitable partnerships in practicing anti‐racism education in diverse communities and enabling action‐oriented anti‐racism education as a site of advocacy, emancipation, and institutional practice for social change.

Analyzing the Relationship Between Chronic Periodontitis and Psychological Stress in Elderly Patients: A Study Protocol.

Although stress is the body's physiological response to challenging life events, chronic exposure to a stressor may not cause stress. In such cases, stress negatively impacts some physiological functions, which can lead to psychosomatic diseases. According to research, inadequate coping mechanisms and long-term stress are factors that moderate the risk and progression of periodontitis. As a result, theories explaining how stress affects the periodontium have been put forth. The clinical examination comprised measurements of the probing pocket depth (PPD), clinical attachment level, number of teeth present, and plaque index. The current study uses a questionnaire to examine how psychosocial stress affects periodontium. A written consent form will be obtained after each patient has received an extensive description of the study's objectives. The instrument for diagnosis and natural illumination will be used during the patient's examination. PPD and clinical attachment loss will be compared with a questionnaire. Patients who are under stress should receive additional periodontal care to prevent periodontal disease from emerging or, if the issue already exists, from progressing to a more critical stage. Stress here deserves special attention because it is a natural part of people's life experiences with various intensities.Prejudice suggests that psychological stress and anxiety have a role in the advancement of periodontitis, which is consistent with the findings.

What frailty can tell us about ageing well: towards an alternative paradigm to 'successful ageing'.

This paper considers the concept of successful ageing by means of a dialogue with the concept of frailty. This dialogue reveals the limits and blindspots of both concepts as well as their apparent dichotomy and the importance of understanding both the objective and subjective experience of ageing. In particular, the dialogue highlights that both frailty and successful ageing are social constructs that derive their meaning from what society values (autonomy, youthful capacities). They cannot by themselves account for the fact that flourishing and frailty are often found together whilst conversely successful ageing may not bring satisfaction. I argue that the arts and humanities supply us with conceptual and methodological tools with which to revisit what it is to age well offering a holistic approach that combines sensitivity both to older people's lived experience and to the underpinning material conditions and embodied realities. For this purpose, and building on previous scholarship in cultural gerontology, I suggest the unique value of concepts and frameworks associated by Simone de Beauvoir. When brought into alignment with the tenets of cultural and narrative gerontology, these concepts facilitate a rich understanding of the nuances and paradoxes of flourishing in deep old age which can also aid in restorying both old age and the life course more generally. I illustrate this through two examples: a feminist self-help guide to ageing, which accepts both limitations and growth and a film that imagines the possibilities of authentic ageing even despite a context of poverty, patriarchy and Alzheimer's Disease.

The impact of the pandemic on the lived experience of people with bipolar affective disorder

Objective: This article aims to understand the impact of the COVID-19 pandemic on the lived experience of people with Bipolar Affective Disorder (BAD). Method: Using the critical phenomenological method, guided by the phenomenology of Merleau-Ponty, phenomenological interviews were carried out with 06 participants diagnosed with BAD who were already followed up by a health service linked to the teaching clinic of a University. Results: The units of meaning attributed to the interviewees' accounts were divided into four categories: 1) Intense and reduced cycles; 2) Imprisonment of existence; 3) The other that perplexes me; and 4) Dealing with feelings. The experiences described denote a reduction in the possibilities caused by feelings of fear, imprisonment, irritation, confusion and loss, which present themselves as a circular and intense void. Conclusion: The COVID-19 pandemic has impacted the lives of people who experience BAD by intensifying the complexity of their illness, making specific forms of care necessary which can provide the reconstruction of their experiences with BAD in the pandemic, as well as providing new meanings to their lives.

Dimensions of living with emetophobia

Purpose This paper aims to present an examination of selected literature about the lived experiences of those with emetophobia. Its intention is to inform further empirical enquiry and subsequent approaches to treatment and care aimed at inclusive support for sufferers. To that end, it is important to bring the sufferers’ narrative into public and professional domains. Design/methodology/approach A systematic search of multiple databases using the search engine Discover@bolton and grey literature was undertaken to obtain evidence about the lived experiences of people with emetophobia. The search terms used were “emetophobia” and combinations of associated topic phrases using Boolean operators (AND / OR): “Emetophobia” OR “fear of vomiting” OR “fear of being sick”, Emetophobia AND “lived experiences” and finally Emetophobia OR “fear of vomiting” OR “fear of being sick” AND “lived experiences”. Eight papers were included in the review and five items of grey literature. Findings Several themes were identified in this literature including fear, escape and avoidance, other influences, consequences and medicalisation. The findings reveal that the experiences of those with emetophobia are subsumed beneath a focus on diagnosis and treatment. When it comes to understanding the actual lived experience of a person with emetophobia, the evidence presents the reader with what treatment may work and how they might respond to it, but largely omits the voice of the individual with emetophobia. This signals a need to undertake enquiry to bring this to the fore and so inform ways of greater inclusive practice for the public and professionals alike. Research limitations/implications The evidence reviewed in this paper can be noted for the limited discussion about the individual’s lived experience of emetophobia. Gaining insight into this would contribute to raising awareness in a wider public arena and inform carers and healthcare professionals’ understanding. It would also display the importance of an individual context and health journey. Practical implications Knowing this can inform approaches to helping an individual either to live with the phobia and manage its impact on daily living (positive rather than maladaptive coping mechanisms) or to overcome it with or without adjunct medical treatment (if this is possible). Social implications Knowing based on contemporary empirical enquiry will inform policy and guideline development. Whatever course is taken, it must contribute to steps being taken towards achieving a better quality of life for individual sufferers. The findings of this paper likewise inform the need for further study into the individual lived experience of emetophobia. Originality/value This paper is original in having identified a need to bring empirical evidence of the lived experience of sufferers with emetophobia into the public and professional domain.

The lived experience of people with adrenocortical carcinoma

The lived experience of people with adrenocortical carcinoma

‘Then I Met This Lovely Police Woman’ Young People's Experiences of Engagement with the Criminal Justice System

AbstractYoung people's voices detailing how they experienced engagement with the criminal justice system following child sexual abuse, what was helpful or unhelpful and how services can be improved to minimise secondary victimisation and maximise the potential for healing are largely absent from the research literature. This paper draws on semi‐structured interviews with a culturally diverse sample (n = 47) of young people aged 14 to 25 across Ireland and Canada about their experiences of disclosure and engagement with systems. Data were collected pertaining to experiences engaging with law enforcement personnel using thematic analysis with a trauma‐informed lens. The research identified three key themes: the importance of feeling safe through kindness, transparency and being believed; the importance of having a say; and the importance of timely court processes. The study builds on the small body of qualitative research illustrating young people's lived experiences of engaging with the criminal justice system and provides empirical support for promoting a trauma‐informed approach in how police engage with young people. Guidance is offered for police professionals on how to engage with adolescents following sexual abuse.

Menstruation and learning disability across the life course: Using a two‐part scoping exercise to co‐produce research priorities

AbstractBackgroundAcross the life course, women and girls with learning disabilities and their carers report difficulties in accessing information and support with menstruation, yet their experiences are often overlooked in initiatives to improve menstrual health and wellbeing. Our aim was to collaborate with women with learning disabilities to co‐produce future research priorities in a UK context.MethodsWe undertook a two‐part scoping exercise to explore what is known about this topic from a life course perspective, beginning pre‐menarche and extending to post‐menopause support. This combined a rapid scoping review of the literature since 1980 with a stakeholder consultation where people with learning disabilities, family carers, advocacy groups and staff working across education, health and social care were invited to share their experiences of menstruation support.FindingsUK and international literature provided insight across five narrative themes. Seventy stakeholders took part in our consultation, enabling the identification of five key themes. Findings across both highlight examples of supportive practice and valued resources alongside enduring health inequalities and barriers to menstruation support faced by women and girls with learning disabilities across the life course.ConclusionOur scoping exercise identified multiple gaps in research and practice, ongoing reproductive health inequalities and a need for improved access to peer support, resources and training that take a life course approach. The scoping exercise indicates the need for further empirical research on menstruation and learning disability, with a particular focus on collating people's lived experiences.

Embodied Uncertainty and COVID-19: Social identity, stigma, trust and coping through the pandemic

The COVID-19 pandemic has been a novel and evolving experience impacting health, livelihoods, well-being, decision-making, and community life. While uncertainty is seen as integral to the pandemic experience, limited literature has examined the consequences of the same, as embodied within individual and collective experiences. From the theoretical lens of Embodied Uncertainty (Sword-Daniels et al. 2018), the present study explored meaning making and coping with uncertainty as embodied in the lived experiences of the pandemic, through longitudinal qualitative research (LQR). Participants from a diverse socio demographic pool were interviewed in 2020 (N = 30) and 2021 (N = 14), following the two major phases of Covid-19 outbreak in India. Thematic analysis revealed complex intersections between social identity, stigma and economic strife and how novel coping strategies were being employed as the ongoing nature of the pandemic became a reality. We also found shifts in information seeking and institutional trust, shaped by the lived experiences of people as opposed to policy and state action. The results highlight key areas of vulnerability and coping with uncertainty in collective crises, gaps in state response and its impact, and how social identities shape interpretations of risks.

Centering context when characterizing food environments: the potential of participatory mapping to inform food environment research.

Food environments are a critical place within the food system to implement interventions aimed at enabling sustainable diets. In this perspective article, we argue for the need for food environment research to more comprehensively examine the different types of food environments that people access within their communities to ensure that interventions and programs are better aligned with people's lived experiences. We highlight the potential ways in which participatory mapping (PM) can be leveraged to better design food environment research by: (1) identifying the different food environment types that are accessed within a given community; (2) providing insight into the timing for data collection; (3) informing the prioritization of where to conduct food environment assessments; and (4) highlighting the dynamism of food environments over time (e.g., across a given day or across seasons). We provide a case study example of the application of PM and the lessons learned from it in Cambodia. By conceptualizing food environments in a more comprehensive way, from the perspective of the people living within a given community, we will be able to measure food environments in a way that more closely aligns with people's lived experiences.

Microaggressions in everyday life: race, gender, and sexual orientation

AbstractBeing the victim of a microaggression, that is, a relatively minor act of hostility that targets someone's (marginalized) social identity, can be distressing, but so can merely being in doubt over whether one has been the victim of such aggression. To address this last problem, Regina Rini has proposed a novel understanding of microaggressions that is meant to eliminate such doubts. On her “Ambiguous Experience Account,” whenever members of marginalized groups believe they might have been subjected to a microaggression, a microaggression will have been committed even if the would‐be perpetrator was not motivated by prejudiced aggression. This article challenges this account on grounds of being incompatible with people's lived experiences, including those of the would‐be victims, and argues that we should instead accept the conventional account on which microaggressive acts must be consciously or unconsciously motivated by prejudiced aggression. At the same time, it shows that those falsely suspected of having committed microaggressions will still merit blame sometimes for having failed to signal that their behavior was respectful of others, which lessens the concerns that Rini's conceptual engineering seeks to address. I conclude by drawing out some implications for the debate on microaggressions and attributional ambiguity.

Experiences of People Living with Parkinson's Disease in Care Homes: A Qualitative Systematic Review.

Incidence of disability secondary to Parkinson's disease is increasing faster globally than any other neurological condition. The diverse appearance of symptomatology associated with Parkinson's, and the degenerative nature and subsequent functional decline, often increase dependence on caregivers for assistance with daily living, most commonly within a care home setting. Yet, primary literature and evidence synthesis surrounding these unique and complex care needs, challenges and the lived experiences of this population living in long-term nursing or residential facilities remains sparce. The aim of this review is to synthesize qualitative literature about the lived experience of people with Parkinson's disease living in care home settings. A systematic search of the literature was conducted in October 2023 across six different databases (CINAHL, Medline, EMBASE, PsycINFO, Scopus and Cochrane Library). The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) was used to guide this review. Five articles met the inclusion criteria. Four themes were identified following evidence synthesis: (1) Unique pharmacological challenges. (2) Transitioning and adapting to care home life and routines. (3) Dignified care within care homes. (4) Multidisciplinary care vacuum in care homes. This review revealed the significant and unique challenges for people with Parkinson's disease when transitioning into care homes. These are exacerbated by wider social care challenges such as staffing levels, skill mixes and attitudes as well as a lack of disease-specific knowledge surrounding symptomatology and pharmacology. The lack of multi-disciplinary working and risk-adverse practice inhibited person-centred care and autonomy and reduced the quality of life of people living with Parkinson's disease in care homes. Recommendations for practice highlight training gaps, the need for consistent and improved interdisciplinary working and better person-centred assessment and care delivery.

"It's just us sitting there for 23 hours like we done something wrong": Isolation, incarceration, and the COVID-19 pandemic.

For the millions of people incarcerated in United States' prisons and jails during the COVID-19 pandemic, isolation took many forms, including medical isolation for those sick with COVID-19, quarantine for those potentially exposed, and prolonged facility-wide lockdowns. Incarcerated people's lived experience of isolation during the pandemic has largely gone undocumented. Through interviews with 48 incarcerated people and 27 staff at two jails and one prison in geographically diverse locations in the United States, we document the implementation of COVID-19 isolation policies from the perspective of those that live and work in carceral settings. Incarcerated people were isolated from social contact, educational programs, employment, and recreation, and lacked clear communication about COVID-19-related protocols. Being isolated, no matter the reason, felt like punishment and was compared to solitary confinement-with resultant long-term, negative impacts on health. Participants detailed isolation policies as disruptive, detrimental to mental health, and dehumanizing for incarcerated people. Findings point to several recommendations for isolation policy in carceral settings. These include integrating healthcare delivery into isolation protocols, preserving social relationships during isolation, promoting bidirectional communication about protocols and their effect between facility leadership and incarcerated people. Most importantly, there is an urgent need to re-evaluate the current approach to the use of isolation in carceral settings and to establish external oversight procedures for its use during pandemics.

Nutritional considerations for gender-diverse people: a qualitative mini review.

Dietitians working with gender-diverse people may require different skills and knowledge than those caring for cisgender men and women, as indicated by a growing body of literature that highlights gender-diverse people's unique experiences with and relationships to nutrition and eating behaviors. To provide insight into how dietitians can best serve this population, this mini review identifies and summarizes qualitative studies that investigate gender-diverse people's lived experiences and perspectives regarding nutrition, eating disorders, and access to eating-related healthcare services. Fourteen studies examining nutrition or eating behaviors among gender-diverse samples were selected through a systematic search and screening process: 11 focused on disordered eating or eating disorders and the remaining three focused on nutritional needs, nutritional knowledge, and food insecurity. Extracted themes included: using dietary restriction to suppress secondary sex characteristics or conform to societal norms; the impact of gender-affirming care on disordered eating; negative experiences with, and beliefs about, nutrition and eating disorders healthcare services; and suggestions for clinicians. Recommendations discuss the need for increased trans literacy among clinicians, the creation of safe spaces for gender-diverse people with eating disorders, and the importance of dual competencies in eating disorders treatment and gender-affirming care.