Lived Experience Research Articles

When ethnicity is “national”: mapping ethnic minorities in Europe’s framework convention for the protection of national minorities

ABSTRACT Legal and policy categorizations of group belonging play an important role in analysing lived experiences of discrimination, since the scope of minority protection requires individuals to prove their belonging to a minority group. This article maps the existing classifiers of minority identification as they are used in the Framework Convention for the Protection of National Minorities, Europe’s most comprehensive treaty designed to protect the rights of national minorities. I engage with the concept of ethnicity as a “knot of distinction”, looking at which minorities qualify as “national” in different countries. When is ethnicity used as a proxy for religion, when for race, and when for language? What categories are omitted? By inductively analysing the rationales presented by different EU countries of which minorities are “national”, and based on which grounds, this article reveals a messy, historically and politically driven picture, but one that can help us understand some regional patterns.

Pre-service teachers’ perceptions of mathematics education and social justice

Many instances have presented mathematics as a difficult subject for students, and some of these difficulties have been perceived as an injustice to those who suffer from it. Meanwhile, no child is to be left behind in building a just society if all were to experience the collective good of mathematics. For this reason, it became necessary to explore pre-service teachers’ perceptions of mathematics as social justice in their lived experiences. In doing this, the qualitative interpretive approach was adopted, where qualitative data was collected, transcribed, and analysed using the case study design. A sample of eleven pre-service teachers were involved in the study. The findings indicated that the pre-service teachers had experienced severe issues of mathematics as social justice in their previous schooling that were unfair to them. However, they now felt mathematics could be interesting if delivered in a manner that let their voices be heard in the delivery process.

Life Experiences of Individuals with Covid-19: A Qualitative Study

Life Experiences of Individuals with Covid-19: A Qualitative Study

A Qualitative Exploration of Factors Affecting Academic Achievement of University Students

The purpose of this study was to identify the prospected factors affecting undergraduate university students' academic achievement. This study adopts a qualitative approach to explore the lived experiences and perceptions of university students regarding the factors that impact their academic achievement. The study's general population includes all of Punjab's universities and education departments. Purposive sampling was used to select the desired participants for the interview, and 10 participants were chosen. A semi-structured interview was used to gather qualitative data. Participants' interview responses were transcribed for qualitative data analysis, and thematic analysis was performed. Seven main themes (e.g., family, environment) and all sub-themes were categorized into positive (e.g., Supportive family, self-drive) and negative factors (e.g., Performance anxiety, holistic environment at home). The findings have implications for educators, policymakers, and students. The results may serve as a guide for students and education institutions seeking to raise university students' academic achievement.

Formation in coffee production: knowledge from the Coffee Farms of Ituango

This article presents Ituango's coffee producers as knowledgeable individuals who possess a wealth of valuable insights. The research methodology employed was narrative-based, designed to capture the lived and told experiences and perspectives of the growers in a participatory and dialogic manner. The narratives were grouped according to thematic affinities into two categories: technological evolution and adaptation to change; and coffee growing, a formative path. The first category contains testimonials that highlight the history of coffee growing in Ituango and perceptions about the evolution of technology in coffee production. The second category is comprised of testimonials that emphasize coffee culture as a vocation centered around family. The skills of the coffee producers were recognized in creating support networks, promoting collective work, enabling continuous learning, promoting women's participation in coffee farming, and fostering critical thinking to adapt to technological advances in their environment. All these contributions from coffee growers are significant in the global coffee chain sustainability.

Parent, child, and adolescent lived experience using the insulin-only iLet Bionic Pancreas.

Automated insulin delivery (AID) systems show great promise for improving glycemic outcomes and reducing disease burden for youth with type 1 diabetes (T1D). The current study examined youth and parent perspectives after using the insulin-only iLet Bionic Pancreas (BP) during the 13-week pivotal trial. Parents and youth participated in focus group interviews, with questions assessing participants' experiences in a variety of settings and were grounded in the Unified Theory of Acceptance and Use of Technology. Qualitative analysis was completed by 3 authors using a hybrid thematic analysis approach. Qualitative analysis of focus groups revealed a total of 19 sub-themes falling into 5 major themes (Diabetes Burden, Freedom and Flexibility, Daily Routine, Managing Glucose Levels, and User Experience). Participants' overall experience was positive, with decreased burden and improved freedom and flexibility. Some participants reported challenges in learning to trust the system, adjusting to the user interface, and the system learning their body. This study adds to the growing literature on patient perspectives on using AID systems and was among the first to assess caregiver and youth experiences with the BP system over an extended period (13 weeks). Patient feedback on physical experiences with the device and experiences trusting the device to manage glucose should inform future development of technologies as well as approaches to education for patients and their families.

Black Women’s Lived Experiences of Informal Street Trading in East London, South Africa

The study sought to evaluate women’s lived experiences of informal street trading in East London with specific reference to the coping strategies they adopt and their challenges within the industry. A qualitative method was used, adopting a case study design. Interviews were conducted with fourteen street trader women participants who were purposefully selected because of the artefacts they displayed for sale. Data collected through semi-structured interviews were thematically analysed. The results revealed that the harsh street-trading environment forced the women traders to adopt some coping strategies, for example, using the history behind the artefacts they were selling in order to encourage customers to buy, customer care, always displaying a smile to their customers, and bargaining with the customer. The study also emerged from the study that the women were experiencing challenges with their trade, including competition, bad weather, price drops, and high transport costs. The study contributes to an improved understanding of the life realities faced by black rural women informal street traders in East London.

Substance Use Disorder Care in Skilled Nursing Facilities: Characterizing Resident Experiences.

Patients with substance use disorder (SUD) may face many challenges when being cared for in skilled nursing facilities (SNFs), such as stigma and inadequate access to treatment. This study aims to learn from the perspectives of SNF residents with SUD. Nineteen semistructured interviews were conducted at 5 SNFs in the Chicago Metropolitan Area. Additionally, Likert-type responses and substance use screening tests were collected. Qualitative data were analyzed using Dedoose version 9.0.107 (Sociocultural Research Consultants, LLC, Los Angeles, CA). Qualitative analyses identified 4 themes: (1) the SNF can be a positive site for recovery, (2) barriers to recovery in SNFs are variable, (3) lived experiences with SUD care and harm reduction are heterogeneous, and (4) the needs of residents with SUD encompass multiple domains. Results highlighted the variability of access to counseling and SUD treatment, as well as the prevalence of stigma, substance use, and overdose in SNFs. Results revealed the need for access to social work support, activities, counseling services, and improved staff knowledge of treating SUD. SNF residents living with SUD experience variable quality of care and may have difficulty accessing counseling and medical treatments for SUD, depending on the available resources in the facility to which they were admitted. The quality of care for residents living with SUD requires further study as more patients with SUD require SNF care.

'If I Don't Have My Support Worker in the Room…': A Multi-perspective Mixed Methods Study of Remote Daily Living Support for Neurodivergent Young Adults.

Information technology is increasingly being employed for providing support and interventions in disability and health service contexts. This study aimed to investigate service users' and support workers' perspectives on remote support in daily living for young adults with neurodevelopmental conditions. Using a convergent mixed methods approach, we integrated qualitative and quantitative findings from survey responses and focus groups. Young service users (aged 18 to 29) diagnosed with ADHD and/or autism (n = 35) and support workers (n = 64) from four municipalities in Sweden responded to a survey designed to tap into their lived experiences and views. The topic was explored further in focus groups with young service users (n = 7) and support workers (n = 3). Open-ended survey questions were analyzed using qualitative content analyses and complemented with information from the focus groups, while closed survey questions were summarized descriptively. Inferences were merged in a joint display. While participants reported having access to digital devices, service routines for remote contact were not in place. Service users were more hesitant than support workers in endorsing remote support, expressing concerns that this approach would be inferior to in-person support (e.g., owing to miscommunications and insufficient social and emotional contact). Still, both groups expressed that remote contact may at times be a beneficial complement to in-person meetings, increasing accessibility and user choice. Service providers planning to implement remote support elements should explore the demand, acceptability, and organizational readiness for this approach. Moving forward, user engagement will be crucial to meet individual preferences, values, and needs.

Identifying how pre-existing resources combine to shape the experiences of work and family life of a diverse sample of working parents with at least one child in primary school in Scotland during COVID-19 pandemic-related social restrictions: a qualitative descriptive design

ObjectivesThis study aimed to identify factors that shaped working parents (WPs’) experiences of COVID-19-related social restrictions and analyse the relationships between those factors.DesignA qualitative descriptive design was used to collect...

Adolescents’ perspectives on a novel digital treatment targeting eating disorders: a qualitative study

BackgroundEating disorders in adolescence are associated with high psychological distress, impaired function and high comorbidity. Despite the severity, eating disorders remain highly underdiagnosed and untreated. Digital technology provides promising opportunities for treatment, however studies focusing on digital treatments for adolescents with eating disorders are lacking. The main aim of this study was to explore the perspectives of adolescents with lived experience of eating disorders on factors they deemed to be relevant in the development of a novel digital treatment.MethodsA qualitative intervention development study using semi-structured individual interviews. Data collection, coding and analysis were conducted using the principles of reflexive thematic analysis. Participants were adolescents aged 16–19 years, with a self-reported diagnosis of anorexia nervosa, bulimia nervosa or binge eating disorder, currently in the final phase or completed psychological treatment for an eating disorder within the last five years.ResultsA total of 16 adolescents participated in the study, all females. Mean age was 17 ½ years (SD = 1.01). An in-depth understanding of the adolescents’ perspectives was developed into three themes: Facilitating self-awareness and readiness to change; Strengthening interpersonal relationships and decreasing social isolation; Ensuring feeling seen and motivating regular use.ConclusionsThis study provides a unique insight into the perspectives of adolescents with lived experience of eating disorders. The uptake and engagement can be optimized in a novel digital treatment for eating disorders by taking the adolescents perspectives into consideration.

The politics of fat positivity and fat acceptance: Exploring select post-millennial, South Indian “fat films”

ABSTRACT While the representation of the fat body in post-millennial mainstream South Indian films has often been problematic due to the inherent biases against non-normative bodies, a promising trend has been visible in recent post-millennial South Indian movies centered on fat protagonists. Known as “fat films” within fat activism for their stance on fat positivity and fat acceptance, these movies claim to promote liberatory discourses regarding fat bodies. However, we argue that the liberatory potential of these movies often becomes limited due to the structurally similar, formulaic plots that construct fatness as a liminal, alterable state of being. For our analysis, we have chosen three mainstream South Indian “fat films” released in three different Indian languages in which the narratives navigate through the complex life experiences of the fat protagonists: Da Thadiya (Hey Fatso) (2012), a Malayalam movie directed by Ashiq Abu; Inji Iduppazhagi (Size Zero) (2015), a Tamil movie directed by Prakash Kovelamudi; and Laddu Babu (2014) a Telugu movie directed by Ravi Babu. It is found that the subversive potential of these films is undermined by a host of issues, both specific and general, such as a) their construction of fatness as an abject form of embodiment where it becomes a constant source of laughter b) their reductive and redundant portrayals of fat subjectivities and inability to contribute alternative narratives which aren’t centered on the fat protagonists’ “eternal” conflict with their bodies and c) their inability to interrogate the larger body politics behind the aestheticization of certain bodies as normative.

Examining behavioral settings and affordative space for the case of autism spectrum conditions in embodied cognition

ABSTRACT The aim of the paper is to deepen into a theoretical account on the role of behavioral settings and relational affordative space and how this perspective can be used to reconceptualize various human cognitive developmental trajectories and conditions. In the course of this theoretical work, we want to contribute in rethinking developmental trajectories based on the role of behavioral settings and relational affordances from an embodied perspective. Behavioral settings emerge from joint actions in conjunction with the affordances available. These affordances will have multiple levels and kinds of meanings for the organism which is why we need to distinguish between the general affordances for a form of life and the particular affordances for particular agents that are generated through sensorimotor interactions. We propose to apply this theoretical frame in different developmental conditions, taking as a leading example the Autistic Spectrum, extending it to other lived experiences of other groups marginalized by “normative behavioral settings” – and the ensuing ethical concerns.

Cancer stigma: the need for policy and programmatic action.

Cancer is a stigmatized disease in many countries that impacts the quality of life and mental health of people affected by cancer. This commentary examines some dimensions of cancer stigma and has been developed based on insights from participants in a Union for International Cancer Control program dedicated to cancer patient organizations in low- and middle-income countries. Aimed at program managers and policy makers, this commentary highlights the importance of developing strategies to reduce cancer stigma in cancer control programs in different contexts, working closely with community-based civil society organizations and those with lived experience of cancer to understand, evaluate, and take action regarding the impact of cancer stigma on health-seeking behavior and patients' quality of life.

Participation, assertion and aspiration-indigenous teacher agency in higher education

ABSTRACT Educational research often silences teachers’ voices, distorting perspectives. This article delves into the marginalized voices of educators and administrators, focusing on Indigenous agencies within higher education (HE) in the state of Jharkhand, India. Employing the narrative interview method of oral history, it elucidates life stories through lived experiences amidst conflicting educational paradigms. Drawing from the author’s doctoral research, the article provides a historical and socio-political context of colonial legacies and contemporary challenges faced by Indigenous communities in India self-identifying as ‘Adivasi.’ Synthesizing an analytical framework through a ground-up approach, agency theories uncover new themes within HE’s temporal, spatial, and personal-social space. The findings describe counter-strategies against systemic denial of Indigenous agency within HE, contributing to discussions on the requirement of context-specific epistemic frameworks for India’s Tribal communities to assert their voices and choices in HE.

Journey in the Impure Land: Buddhist Pilgrimage and Perceptions of Life and Old Age in Vietnam.

Religiously inspired travel has burgeoned in Vietnam in recent years, amidst rapid economic development and a booming tourist industry. Buddhist pilgrimages particularly attract older women, who compose the majority of temple goers in Vietnam. Having lived through volatile historical periods of war, economic hardship, and political transformations, travelling on pilgrimage is the first opportunity for many older Vietnamese women to enjoy new places and experiences. Drawing on data collected during my field research among Buddhist women pilgrims in their sixties and seventies from Ho Chi Minh City, I show how pilgrimage is seen as a journey of a lifetime and how it reflects the perception of life and self-transformation along the life course. Drawing on Victor and Edith Turner's (1978 [2011]) discussion of pilgrimage as the antistructure of everyday social life, this paper explains why pilgrimage is markedly different from other life experiences of Vietnamese women, and how religious travel positions old age not as the culmination of self-development, but rather as an ongoing process of gaining wisdom.

Experience is central and connections matter: A Leximancer analysis of the research priorities of people with lived experience of mental health issues in Australia

Mental health research priority-setting has a long history internationally. Many of these studies use expert panels or consensus methods across multiple mental health stakeholder groups. Whilst such approaches are designed to produce agreed research priorities, there is a risk that the specific and nuanced priorities of less powerful groups, especially those with lived experience of mental health issues, are lost in translation. We aimed to develop Australian mental health research priorities from the perspectives of people living with mental ill-health and their carers, families and kinship group members. A cross-sectional, open-ended survey was conducted nationally in Australia during January and February 2022. We asked participants to list three priorities on which mental health research should focus. Responses were analysed using Leximancer, a text analytics tool, to examine the concepts and their connections across the data. A total of 365 people with lived experience of mental ill-health participated in the survey. The majority (57%) identified as consumers, with 14% identifying as carers and 29% reporting both types of lived experience. Participants were from all Australian states and territories and from metropolitan, regional and remote areas. The Leximancer analysis generated 30 concepts in six thematic priority areas. The most prominent themes were experience, treatment and impact, followed by stigma, peer and trauma. The concept maps displayed complex connections and interrelationships between specific concepts, with lived experience a large and central concept. Analysis of the textual responses emphasised the importance of examining specifics, as the nuanced research priorities traversed themes and concept across the maps. This project provides robust evidence on the central importance of experience as driving mental health lived experience research priorities. Further, it demonstrates that people with lived experience describe the key issues in complex, interrelated ways that require multi-factorial research approaches to address.

Analyzing Lived Experiences of Athlete and Coach Relationships in Sports

Objectives. The two main stressors affecting athletes’ wellbeing are relationships between coaches and athletes and social support. This study aims to investigate the connections between athletes’ psychological health, social support, and coach-athlete interactions. Relationships between coaches and athletes have a favorable impact on future coaching techniques and support systems, which in turn improves athlete wellbeing. Materials and methods. This study employed a quantitative approach using survey methods. The study involved 323 respondents consisting of 231 males (71.52%) and 92 females (28.48%). The instrument used in this study was the Instructor–Student Rapport Scale, comprising 2 dimensions (pleasant interactions and personal relationships). The study results were analyzed using the t-test to determine the significance of differences in athletes’ life experiences based on their relationship with the coach. The findings of the study explain that the experiences of athletes’ gender have differences regarding the relationship with the coach. Results. This result has also been proven by the results of the t test calculation of <0.001. Meanwhile, the results of t test calculations related to the type of sport (individual and group) obtained results > 0.001, which states that there is no difference in life experience between athletes and coaches. Conclusions. These findings lead to the conclusion that the most crucial factor in facilitating and enabling meaningful life experiences between coaches and athletes is the coach’s proximity to the athletes.

The lived experiences and perceptions of middle-aged adults in Dominica who have survived severe storms-a qualitative exploration.

The Eastern Caribbean island of Dominica has experienced diverse negative effects from the North Atlantic hurricane season, including deadly storms like Hurricane Maria in 2017. Vulnerability is increased by geographic location, small island developing state (SIDS) status, and ecosystem characteristics. A variety of negative health effects including stress and anxiety are caused by powerful storms. The perspectives of middle-aged (the "sandwich generation") survivors in this post-storm milieu are understudied. This phenomenological qualitative study describes the perceptions of middle-aged (35-55 years) Dominicans, purposively recruited with gatekeeper assistance from communities stratified according to four natural hazard vulnerability categories designated by the Climate Resilience Execution Agency for Dominica (CREAD), regarding their lived experiences in the context of severe storms. Data was collected between June and August 2022, using primarily Zoom-based semi-structured, individual interviews (12 of 13), guided by the principles of saturation and maximum variation. Verbatim interview transcripts were thematically analyzed with constant comparison using an ATLAS.ti-supported hybrid deductive-inductive coding frame. Reflexivity and contact summary sheets were used to minimize bias. Ten women and three men from diverse CREAD vulnerability and sociodemographic backgrounds were recruited. Data condensation yielded three organizing themes: (i) "The diverse health effects of severe storms", (ii) "Response to and recovery from severe storms", and (iii) "Preparedness and precaution for severe storms". These themes encapsulated the health impacts of severe storms on Dominicans and elucidated the role of facilitating and barricading resilience factors. Severe storms produced direct and indirect mental, social, and physical health impacts on middle-aged Dominicans, including anxiety and burnout. Participants used faith-based, tangible community-based support, and emotional mechanisms to cope with and demonstrate resilience. Better risk communication and early warning systems would improve population readiness. Persistent dispirited attitudes toward storm preparedness among some participants suggest the need for targeted methods to enhance community involvement in disaster planning, including traditional approaches like "coup-de-main" (self-help).

Transforming Challenges to Victories: An Inquiry on Transformational Leadership of School Leaders in the Public Elementary Schools

This study narrated the lived experiences of school heads in public elementary schools on transformational leadership. This employed qualitative phenomenological research. Ten transformational school leaders as participants, provided rich narratives that coalesced around three primary themes: fostering shared vision, setting high expectations and motivation, and innovative teaching practices. Alongside, coping strategies for the challenges associated with transformational leadership revealed three major themes: individualized support, collaboration and team building, and continuous professional development. Furthermore, the study identified two overarching learning insights derived from school heads' lived experiences: the need of emotional and mental well-being support. The Department of Education officials are urged to leverage the study's findings to refine its leadership programs and cultivate a leadership culture that aligns with contemporary educational needs and aspirations. Teachers, in turn, should understand the impact of transformative leadership style, be inspired with this approach, and appreciate that this could contribute to their growth, job satisfaction, and adaptability. Finally, school leaders must embrace transformational leadership approach. This approach not only fosters a positive and dynamic work culture but also contributes to improved teacher performance, student achievement, and overall educational success within the school community.