Lived Experience Research Articles

Addiction recovery stories: Dylan Suttie in conversation with Lisa Ogilvie

Purpose The purpose of this paper is to examine recovery through lived experience. It is part of a series that explores candid accounts of addiction and recovery to identify important components in the recovery process. Design/methodology/approach The G-CHIME model comprises six elements important to addiction recovery (growth, connectedness, hope, identity, meaning in life and empowerment). It provides a standard against which to consider addiction recovery. It has been used in this series, as well as in the design of interventions that improve well-being and strengthen recovery. In this paper, a first-hand account is presented, followed by a semi-structured e-interview with the author of the account. Narrative analysis is used to explore the account and interview through the G-CHIME model. Findings This paper shows that addiction recovery is a remarkable process that can be effectively explained using the G-CHIME model. The significance of each component in the model is apparent from the account and e-interview presented. Originality/value Each account of recovery in this series is unique, and as yet, untold.

Sensibility in the world of science and gendered society: the ethics and aesthetics of skin in The Skin I Live In

ABSTRACT This paper focuses on the aesthetical and ethical representations of skin in Pedro Almodóvar’s The Skin I Live In (2011). By emphasising the interconnectedness of the skin as an expressive interface mediating between the inner self and the material world, this paper examines how the image of skin extends beyond the visual aesthetics to engage viewers in a haptic sense. I argue that the haptic experience, when actively engaged, can transcend bodily suffering from unjust treatment, charging moving images with ethical consideration and envisioning alternative human bonds in a posthuman condition. By engaging with phenomenological concepts of flesh, intersubjectivity, and interobjectivity, this paper criticises the mistreatment of beings in the scientific field and the objectification of human bodies to sustain a gendered and patriarchal structure. Instead of solely attributing abusive and controlling masculinity and the oppression of women to the patriarchy, it is essential to go beyond traditional categories of male/female and masculinity/femininity and examine the modern systems that excessively alienate human beings. The paper proposes that an individual’s existence precedes social and political identification and advocates for a dynamic way to recognise and describe the process of becoming-body as it continuously undergoes qualitative changes through lived experiences.

Abstract B096: Patient, Provider, and Advocate Perspectives on Factors that Impact Participation of Black Women in Breast Cancer Clinical Trials

Abstract Background: Black women are more likely to present with advanced stage disease and to die following a breast cancer (BC) diagnosis compared with women from other racial and ethnic groups. This persistent health inequity is in part driven by underrepresentation in clinical trials (CTs), as well as structural and social drivers of health. Multi-level factors impact patients’ decision to enroll on a cancer CT. Objective: The goal of the FOR ME (Fostering Opportunities in Research through Messaging and Education) study is to develop, optimize, and test a narrative web-based video intervention for Black women diagnosed with BC to promote shared decision making and CT participation. Here, we report findings from the development phase, wherein we engaged Black women with BC, oncologists and CT office staff, and cancer advocates. Our objective was to identify cross-cutting and unique themes concerning barriers and motivating factors to CT participation, intervention priorities, and to understand lived experiences to enhance authenticity and to inform video content. Methods: Guided by community engaged research approaches, we used multiple qualitative methods, including story circles and 1:1 interviews. We used thematic analysis and inductive and deductive coding approaches. Data analysis for each group followed the same approach: we annotated a subset of transcripts, compiled the annotations into a preliminary codebook, and conducted inter-coder reliability to improve quality and refine the codebook. Finally, we used Dedoose to analyze quotations and code co-occurrences, application frequencies, and relationships. We examined cross-cutting and unique themes during data collection and analysis. Results: In total, 38 Black women with BC participated in interviews and story circles, ranging in age from 27-75 years (M=59, SD =12); about 27% were currently receiving BC treatment and 27% had prior CT participation. Oncologists (n=16) and CT office staff (n=4) reported having on average 11.6 and 9.5 years of CT experience, respectively). Finally, 15 cancer advocates completed interviews, of whom 73% identified as Black women; 87% reported that the organization they were involved with connected patients to or provided education about CTs. Several cross-cutting themes were identified, including: 1) Acknowledgement of time, financial, and logistical burdens of CT participation; 2) The impact that current and historical racism, discrimination and mistreatment has had on CT enrollment for Black BC patients; 3) A lack of accessible CT information poses significant challenges for health literacy; and 4) Positive provider relationships and communication are important facilitators to CT participation. Conclusion: To promote health equity and participation in CTs among Black women with BC, interventions should consider multiple perspectives and prioritize addressing culturally sensitive patient-provider communication, shared decision-making, and patient empowerment. The information we learned will inform the development of a culturally tailored decision aid video. Citation Format: Leslie R. Carnahan, Eliza B. Cohn, Tigist Mersha, Neha Hippalgaonkar, Ryan Nguyen, Kauthar Salum, Ana Williams Waite, Christen Sandoval, Lolita Coleman, Beulah Brent, Paris Thomas, Paramjeet Khosla, Kent F. Hoskins, Vida Henderson. Patient, Provider, and Advocate Perspectives on Factors that Impact Participation of Black Women in Breast Cancer Clinical Trials [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B096.

How dignity matters for life and lifelong learning: insights from participatory story-telling by university students in South Africa

ABSTRACT The claim made is that dignity matters in both legal and recognitional aspects for flourishing and lifelong learning opportunities for young adults. Dignity is understood here as a foundational capability and functioning to be and to do in ways which matter to a person, requiring the material and non-material conditions which enable and secure equal dignity for each person. The claim is first explored drawing on both the capability approach and conceptualisations of dignity, especially the inflorescent form. Then, to empirically animate the claim, the article draws on a participatory story-telling project undertaken in a South African university in 2020 with graduate students, in which they were co-creators of knowledge. Participants were supported pedagogically in producing their own individual and collective digital stories, focusing on their lived experiences of social justice and specifically of human dignity. The project shows that dignity is an especially important capability for young people’s present and future wellbeing and their aspirations. Dignity is formed in and sustained relationally in collective spaces. Further, dignity enables repair of the injustices of the colonial and apartheid past. If dignity is not fostered in and through education in adult and higher education spaces, education will always fall short of social justice aspirations and lifelong learning conditions.

“… I still need to learn some things”: an interpretative phenomenological analysis of the lived experience of extended residential youth care in Denmark

“… I still need to learn some things”: an interpretative phenomenological analysis of the lived experience of extended residential youth care in Denmark

Pilgrims or project managers: premodern challenges for contemporary students

Presenting an alternative to the prevailing emphasis on what constitutes knowledge – knowledge as the fruit of scientific method, something that is objective and detached from the self – I argue for a critical retrieval of premodern approaches to knowledge that were promoted within the Eastern and Western Christian tradition, approaches that are spiritual in nature. I propose that spiritual modes of knowing should be considered alongside other forms of knowing, in service of a richer, more holistic approach to higher education, one that does justice to the multidimensional aspects of human nature, development, formation and flourishing. While not denying the necessity and value of many current forms of knowledge, I propose that students should also be offered opportunities to become familiar with complementary modes of knowing that are likely to extend the repertoire of the ways they read and respond to the world, other people and their experience of life. Such premodern Christian approaches privileged self-giving and self-control, rather than mastery over or control of what was investigated. Their epistemology viewed intellectual, moral and spiritual virtues as intimately interconnected. They considered knowledge to be something revealed and given rather than constructed or exposed by our methodology. The paper considers the educational potential for students today of learning from the premodern emphasis on knowledge as dependent on both ascetic training and affective formation, as entailing capacitation (being attuned to or fitted for external reality), and as promoting self-knowledge and transformation. I contrast premodern and contemporary approaches to knowledge through the metaphors of pilgrim and project manager.

Key stakeholders’ perspectives of illicit drug use and associated harms in the Northern Territory of Australia

BackgroundIn the Northern Territory (NT) of Australia, there are significant evidence gaps about illicit drug use and harms, despite having established monitoring and reporting systems. This paper reports on illicit drug use, associated harms, contributing factors, service needs and priorities in the NT from the perspective and experiences of key stakeholders engaged in providing services for, or advocating on behalf of, people who use illicit drugs in the NT.MethodsFace-to-face and online qualitative interviews were conducted with stakeholders across urban and remote locations in the NT. Key stakeholders were service providers, including acute and primary care clinicians, representatives of Aboriginal community controlled health organisations, lived experience advocates, peak body representatives and public health executives. Qualitative data were analysed thematically.ResultsFour researchers interviewed 21 participants across urban (62%), and remote areas (38%) of the NT. Themes identified were: (1) Illicit drug use and harms are diverse and distinct; (2) Client support needs are complex and influenced by co-morbidities, socio-demographic and cultural factors; (3) Priority population sub-groups need targeted strategies; (4) Local service strengths can be further developed and enhanced; (5) Local services need better resourcing; (6) Invest in progressive legislative and policy reforms; and (7) Improve routine monitoring and evaluation.ConclusionsKey stakeholders described illicit drug use, harms and contributing factors, which provided insights into the local challenges. Participants emphasised that clients have complex care needs, and further investment into targeted strategies are required to improve service engagement with priority groups. Service needs included greater understanding the role of dual diagnosis and its implementation and enhancing integrated and collaborative care in both primary health and acute care contexts. The voices of people with lived experience captured in this paper must inform local strategy and policy development relating to illicit drug use, in alignment with national strategy.

‘Who am I now?’ the lived experiences and identity construction of individuals following bariatric surgery

ABSTRACT Mediatised standards of beauty in contemporary western societies contribute to stigma and discrimination of individuals labelled ‘obese’ by medical professionals. Most people who undergo weight-reduction treatments, including bariatric surgery, choose it due to serious health conditions, often unable to lose weight in any other way. However, they are commonly constructed as ‘cheaters’ and blamed for lacking will and self-control. Cultural beliefs demonising fat and fat people produce the perceptions of an inferior identity, often leading to internalised fatphobia among such individuals. This study investigates the lived experiences of 11 individuals after bariatric surgery using semi-structured interviews analysed via narrative framework. The findings demonstrate paradoxical effects bariatric surgery can have on identity, through a persistent ‘obese’ view of self and body perception challenges, indicating long-lasting harmful effects of symbolic violence these individuals experience due to stigmatisation and medicalisation of fat and highlighting hegemonic discourses inscribing normative views on human bodies.

Combined Association of Depression Interms of Gender Along with Academic Classes of Students

Every person have life experiences with variety of shifts ,turning points and stress during advancement phase of their life. College students are especially susceptible to stress since they are going through both personal and social changes. Among college students depression is becoming more and more prominent globally. The objective of this study was to show depression association interms of gender college students over the academic years (1st year and second year)students. In First year class out of 58 males (Non depression 12 and with depression 46) and out of 42 female (Non depression 22 and with depression 20) and in second year out of 42 males ( Non depression 19 and with depression 23 and out of 58 females (Non depression 41 and with depression17), Our result showed that depression is significantly associated with gender of students along their different academic classes (1st year and 2nd year ) chi square 29.72 (p<0.05).

Male Survivors of Institutional Child Sexual Abuse: A Review

Male child sexual abuse is over-represented in institutional settings. This realization has increasingly come into public focus in recent decades initially through lived experience, often with male survivors’ stories told in the media and subsequently through court cases and government inquiries. Beginning at the turn of the century with the Irish Commission to Inquire into Child Abuse (1999–2009), numerous national and state inquiries into institutional child abuse followed around the world. This scoping review asks the question: What is known from the research about the institutional child sexual abuse of males? Conducted in 2023 five databases were used (APA PsycINFO, CINAL, Medline, Scopus, Web of Science) producing 973 studies for screening. Applying the Arksey and O’Malley framework resulted in 29 studies meeting the inclusion criteria, which were analyzed. Of the 29 studies, 27 could be categorized into 3 broad areas of focus: survivor experience, impact, and disclosure. Two further studies considered: turning points and meaning making. The findings are discussed under the following headings: disclosure, impacts (emotional, mental health, alcohol, and other impacts), and what is helpful to victim/survivors. Implications for practice, policy, and research are examined along with limitations of the current research.

Brigade d’Intervention Théâtrale-Haïti: Staging Counterpublics in Neoliberal Haiti

This article discusses street theater actions by Brigade d’Intervention Théâtrale-Haïti (BITH), a Haitian performance collective whose work staged in 2018—preceding and in alignment with mass mobilizations that swept the nation that year—registered and interrogated the deep impacts on lived experience wrought by a process of intensified neoliberalization in post-2010 Haiti. BITH’s street performances (and subsequent online circulation) made visible and palpable certain Haitian people’s complicity in manifold inequities under such conditions as they also sparked emergent counterpublics through dialogue, affect, and popular aesthetics. Through what we term “creative interference,” BITH’s artivism catalyzed alternatives to civil society from the interstices of available modalities and infrastructures.

Paradise lost? Rental housing insecurity and the lived experiences of amenity migrants in Cairns, Australia

ABSTRACT This paper explores the housing experiences of amenity migrants, focusing on the challenges of rental housing insecurity in Cairns, Australia. Through episodic narrative interviews with a purposive sample of 27 amenity migrants who moved to Cairns between 2016 and 2021, we explore how housing insecurity affects their life satisfaction and consider the implications for urban planning and policy. Our findings reveal that many amenity migrants in Cairns face significant challenges in navigating the rental housing market, which negatively impacts their sense of belonging and overall life satisfaction. Participants reported struggles with rental housing affordability, suitability, and availability, which often led to compromises in their living conditions and a sense of frustration and uncertainty. These challenges were found to have significant impacts on their mental well-being, social integration, and overall quality of life. Importantly, the study reveals that housing insecurity can prompt amenity migrants to consider re-migration as a coping strategy, as they seek more stable and affordable housing options elsewhere. We argue that planners must take a proactive role in addressing housing challenges in regional cities like Cairns, through the development of inclusive and responsive housing policies that cater to the diverse needs of amenity migrants. Practitioner Points Rental housing security is a key factor in amenity migrants’ satisfaction and integration into new communities. Without affordable, adequate, and appropriate rental housing, amenity migrants choose to ‘re-migrate’ to new destinations, seeking better prospects. Responsive urban planning that addresses the diversity and affordability of rental housing helps meet the needs of amenity migrants.

Qualitative exploration of the lived experiences of loneliness in later life to inform technology development

Qualitative exploration of the lived experiences of loneliness in later life to inform technology development

The development of ReGoal, a serious mobile game for young people with conduct problems*

ABSTRACT Research suggests that serious games can be used as supplementary training tools for young people with complex mental health needs. This study aimed to co-produce a mobile-accessible serious game, ReGoal, in collaboration with young people (11–16 years) and an interdisciplinary team of academic experts and practitioners. ReGoal is aimed to serve as a supplementary tool for improving emotion regulation, goal-orientation, and executive functioning skills. This study consisted of three interlinked co-production phases. First, 122 participants, of which 34% had moderate to high conduct problems, completed an online survey about the role of gaming in managing their emotions. During the second phase, 16 young people attended three focus groups in which their lived experiences shaped the narrative of ReGoal. In the third phase, an online user survey gathered feedback from 72 young people playing the most recent prototype of ReGoal. The key findings suggest that young people valued playing ReGoal as a supplementary aid to improving their mood, increasing empathy towards peers and family, reducing anxiety, anger, and impulsivity, and understanding other people’s emotions. Future research should test the applicability and feasibility of ReGoal in reducing behavioural problems with clinical and non-clinical samples.

Vitality at home: a phenomenological study of tele-exercise in women aged 80 and older

BackgroundSince the onset of coronavirus 2019, there has been an upsurge of tele-exercise delivery. Previous studies showed old adults find tele-exercise feasible and acceptable. However, there is limited understanding of the oldest-old’s experiences.MethodThis study used the interpretative phenomenological approach. Two semi-structured interviews and home visits were conducted with six oldest-old women, aged between 81 and 91 years, who participated in tele-exercise classes.ResultsFour superordinate themes were identified: ambivalent perception of safety, ease in regular participation, reminded and guided to move the aged body, and technological adaptation.ConclusionOur findings indicate that tele-exercise has the potential to assist the oldest-old living in the community in maintaining an adequate activity levels at home, which they perceive as the safest place. Emerging themes provide insights into their lived experiences, enabling service providers to enhance tele-exercise services for this group in the tele-health era.

Investigating the Salience of Clinical Meaningfulness and Clinically Meaningful Outcomes in Metastatic Breast Cancer Care Delivery

PURPOSE As metastatic breast cancer (mBC) treatment evolves, there is a need to understand how clinical meaningfulness, or a meaningful change in a patient's daily life, and clinically meaningful outcomes inform patient-centered care. Partnering with key stakeholders ensures patient-centered research incorporates the knowledge and expertise of advisors with lived experience. We describe a multistakeholder engagement approach to examine how people living with mBC (PLWmBC), caregivers, and health care providers interpret clinical meaningfulness and clinically meaningful outcomes and their influence on mBC treatment decision making and care. METHODS Qualitative focus groups with PLWmBC, caregivers, and health care providers were conducted and analyzed along three overarching themes: interpretations of clinical meaningfulness and clinically meaningful outcomes; treatment recommendations, preferences, and decisions; and implications for clinical practice. Patient-led and professional organizations served as research partners in study design, implementation, and interpretation of findings. RESULTS Partnerships were established with four patient-led and three professional organizations representing diverse constituencies throughout the United States. Twenty-two focus groups were conducted with 50 PLWmBC, 24 caregivers, and 41 health care providers (oncologists, n = 11; advanced practice providers, n = 13; oncology nurses, n = 17) between March and June 2023. PLWmBC and caregivers were unfamiliar with the concepts of clinical meaningfulness and clinically meaningful outcomes. Although health care providers were familiar, they did not use the terms when discussing treatment with PLWmBC. Across groups, participants emphasized the importance of meaningful outcomes beyond overall survival, including quality of life and improvement in symptoms and functioning. Participants noted that outcomes considered meaningful are individualized and dynamic. CONCLUSION This study offers insight into how partnering with patient advocacy and professional organizations can enhance research quality and aid translation of findings to clinical practice, thereby supporting patient-centered care.

LIVED EXPERIENCES OF TECHNICAL, VOCATIONAL, LIVELIHOOD TRACK (TVL) SENIOR HIGH SCHOOL STUDENTS IN WRITING TECHNICAL PAPERS IN THEIR CHOSEN TRACK: A QUALITATIVE INQUIRY

The purpose of This qualitative inquiry is to explore and understand the lived experiences of technical, vocational, and livelihood (TVL) senior high school students in writing technical papers in their chosen track within the Davao del Norte Division. This study aims to generate findings that will guide teachers in designing appropriate interventions to help students develop the necessary skills for writing technical papers in their chosen track. The participants are 14 TVL students from three different senior high schools in the Davao del Norte Division, selected through purposive sampling. Through in-depth interviews and focused group discussions the study identifies key challenges such as difficulties with grammar, problem in conceptualization, and meeting deadlines, as well as coping mechanisms like utilizing prior knowledge, resourcefulness, and seeking support. The results underscore the significance of considering online tools, English proficiency and awareness about prospective impacts of learning technical writing. The results of the study highlighted that innovative teaching strategies are required to help TVL students, such as digital literacy programs and mentoring procedures for further faculty enhancement on skills in reading technical writing. The implications call for a better understanding of TVL students' struggles, promoting an educational environment that values digital proficiency and effective communication. Future research should quantitatively examine these challenges' impacts and the role of AI tools in writing, aiming to develop targeted interventions for improved technical writing skills. KEYWORDS: TVL students, technical papers, qualitative study, lived experiences, writing challenges, teacher interventions. Davao del Norte

Dementia caregiving during the COVID-19 pandemic: an interpretative phenomenological analysis of caregivers' experiences.

To explore the lived experience of informal dementia caregivers during the COVID-19 pandemic. Interpretative Phenomenological Analysis (IPA) was employed. Eight primary informal caregivers were recruited from a community mental health service for older people when attending in their role as caregiver of a service-user. Semi-structured interviews were conducted at home or in the clinic based on the participants' convenience and preference. IPA was completed following Smith and colleagues framework for analysis. Six group experiential themes, each with a number of subthemes, emerged from the cross-case interpretative analysis: the ambivalent experience of caregiving (subtheme: those complex emotional experiences); navigating lockdown: lived challenges and opportunities (subthemes: the pervasive fear, intensification of existing struggles, being prevented from caring for a loved one, and lockdown as a time for opportunity); transitioning out of lockdown (subthemes: regaining freedom, but restricted freedom after all and being in a lockdown of one's own); the present with COVID-19, but mostly with dementia (subthemes: dementia, a disease that does not pause, and 'takeaways' from the journey); looking into the future (subthemes: embracing COVID-19 and the true needs); and a word on coping (subtheme: managing it all as best one can). Findings demonstrate the significance of the meaning caregivers ascribed to their experiences on their wellbeing and ability to cope in times of COVID-19 and thereafter. Gaining an understanding of the caregivers' unique experiences is crucial to appreciate how to best support them.

The Digital Sufi Gaze: Between Love, Longing and Locality in COVID Britain

This article examines British Sufi responses to the COVID-19 pandemic within the broader context of Muslim experiences of and reactions to the pandemic. Set within a discussion pertaining to classical and contemporary expressions of Sufism, this article explores Sufi phenomena, including the murshid–murid (Sufi master–novice) dynamic, collective gathering and Sufi gaze (nazar) and whether these phenomena were possible within the inevitable digital environments Sufis were forced into as a result of the COVID pandemic and subsequent lockdowns, experienced in Britain. The author explores Sufi social and intellectual phenomena within classical and contemporary literature in relation to Sufi experiences in the West. She concludes that varied lived experiences and differing views on Sufism and both its classical and contemporary expressions were brought into question as a consequence of the COVID pandemic, the exploration of which are necessary in juxtaposition to one another to add nuance and depth and create holistic research of Sufi communities and Sufism more broadly, within contemporary Britain and further afield.

Toward an assessment of the relevance of proposed public policy in contemporary African society: A retrospective review of Kenya's now‐defunct building bridges initiative, with special reference to post‐election violence

AbstractWhereas competing interests characterize the African public policy sphere today, the lens of mass‐elite differences has hardly been employed to study electoral violence. Accordingly, this article juxtaposes the lived experiences of ordinary Kenyan citizens, obtained through focus groups, with the content of the now‐defunct Building Bridges Initiative (BBI), a comprehensive set of public policy changes proposed by Kenya's political protagonists Uhuru Kenyatta and Raila Odinga in 2017. It poses the following broad question: did the BBI proposals truly intersect with the opinions and lived experiences of the masses? I find that various factors, including the lack of electoral and judicial integrity, and a winner‐takes‐all democratic system, are responsible for post‐election violence according to citizens. A comparative analysis of citizen perspectives and the BBI Report reveals considerable congruence in the understanding of the causes of post‐election violence. The study partly concludes that African leaders should continue to engage in policy entrepreneurship.Related ArticlesHodzi, Obert. 2020. “African Political Elites and the Making(s) of the China Model in Africa.” Politics & Policy 48(5): 887–987. https://doi.org/10.1111/polp.12380.Kouladoum, Jean‐Claude. 2023. “The Role of Freedom of Communication in Modulating the Effect of Political Participation on Electoral Outcome in Africa.” Politics & Policy 51(4): 588–613. https://doi.org/10.1111/polp.12539.Onyango, Gedion. 2024. “DHR‐PA—Democracy and Human Rights in Public Administration in Africa.” Politics & Policy 52(2): 426–49. https://doi.org/10.1111/polp.12584.