Lived Experiences Of People Research Articles

Examining the Use of Autonomous Systems for Home Health Support Using a Smart Mirror.

The home is becoming a key location for healthcare delivery, including the use of technology driven by autonomous systems (AS) to monitor and support healthcare plans. Using the example of a smart mirror, this paper describes the outcomes of focus groups with people with multiple sclerosis (MS; n = 6) and people who have had a stroke (n = 15) to understand their attitudes towards the use of AS for healthcare in the home. Qualitative data were analysed using a thematic analysis. The results indicate that the use of such technology depends on the level of adaptability and responsiveness to users' specific circumstances, including their relationships with the healthcare system. A smart mirror would need to support manual entry, responsive goal setting, the effective aggregation of data sources and integration with other technology, have a range of input methods, be supportive rather than prescriptive in messaging, and give the user full control of their data. The barriers to its adoption include a perceived lack of portability and practicality, a lack of accessibility and inclusivity, a sense of redundancy, feeling overwhelmed by multiple technological devices, and a lack of trust in data sharing. These results inform the development and deployment of future health technologies based on the lived experiences of people with health conditions who require ongoing care.

A new rural digital divide? Taking stock of geographical digital inclusion in Australia

This article reflects on and progresses Australian and international debates about the urban–rural digital divide. In commentary style, I draw on my own experience of living in rural Australia and six years of scholarship devoted to understanding digital inclusion in geographically remote communities. The paper is anchored theoretically in global scholarly debates around rural digital inclusion, but also deeply contextualised in the current state of digital infrastructure and capability investment and the lived experiences of people in rural Australia. In tacking stock of the geographical digital divide, I combine findings and vignettes from my published research with the insights of other authors and data from the Australian Digital Inclusion Index. I make observations about the evolution of geographical digital inclusion in Australia focused on three themes: incremental digital development; the complexity and cost of getting connected; and compounding factors of disadvantage. These insights culminate in articulation of an emerging digital divide within rural cohorts.

Gesturing in plain sight: dialogical enactments of sustainable futures as being and doing in the world

Addressing the critical question posed by Gudrun Jonsdottir and Anne Kristine Byhring who are asking what place for a common future in the science classroom, this paper focuses on and expands on the construct of dialogical space. Not simply as an abstract concept to describe the presence of divergent ideas or the exchange of idioms, but a space filled with metaphors and material artefacts that exist in the world. On this basis, science education takes seriously the affordances of sensorial perception in space, as physical and material doings, arising from and deeply concerned with the lived experiences of people. By making visible the material relations that give life to human experience, and by giving life to different imaginations, science education can thus become profoundly dialogical: turning away from the expectation of sameness, it houses in itself the invitation of taking authorship and to give form, that being a narrative, a personal journey, or a different way of looking at the world. This is what I call gesturing in plain sight, a science education that critically engages with material artefacts and their relations; one that inhabits the realm of the symbolic and the experiential, and one that speaks to sustainable futures in general, repurposing and reconceiving the work of science education in particular.

Foreign aid, human agency, and self‐reliance in the Pacific: Lessons from the pandemic

AbstractMotivationAmid the highly polarized discourse on development aid in Pacific Islands, few studies explore the perspectives of local people. Missing from the literature is how the subjective experiences of Pacific Islands people responding and adapting to a sudden global disruption influence their perceptions of foreign aid. Faced by the sudden shutdown of export markets, tourism, and labour migration, the COVID‐19 pandemic offered an opportunity to investigate how disruptions from international events affect Pacific Island peoples' perception of foreign aid.PurposeWe investigated how the lived experiences of people in the Cook Islands and Tonga during COVID‐19 may have influenced their perceptions of foreign aid.Methods and approachSemi‐structured interviews guided by open‐ended questions were conducted with 25 individuals in the Cook Islands and 24 in Tonga. Interviewees were purposively selected from staff in government ministries and environmental non‐governmental organizations; from people working in tourism and private enterprise; from members of youth empowerment groups; and from among traditional leaders, faith leaders, high school teachers, fisherfolk, and farmers. The interviews explored their subjective experiences during the COVID‐19 pandemic and the meanings they attributed to them.FindingsThe pandemic closed down tourism and interrupted labour emigration in both countries. In response, people switched to farming and fishing and found ways to redeploy their skills. The pandemic saw increased local innovation, strengthened traditional practices, increased local agricultural output, and enhanced collaboration between foreign donor partners and recipient countries in the development of local human capacity.Policy implicationsRather than repeating history by integrating Pacific Island societies into the globalized economy, or providing bail‐outs through economic restructuring, donors should strive to support the agency and self‐determination of Pacific Islands people. They should start by recognizing the resourcefulness and capacity to adapt shown by participants during the pandemic.

Green Social Prescribing in Practice: A Case Study of Walsall, UK.

This paper presents a case study of Green Social Prescribing (GSP) in Walsall, a medium-sized urban area located in the West Midlands, UK. GSP is a means of enabling health professionals to refer people to a range of local non-clinical nature-based activities, e.g., community gardening and conservation volunteering. As a new practice to address multiple challenges in health and sustainability, GSP has been promoted by the UK government and the NHS in the past few years. There is as yet limited evidence and knowledge about how this approach is implemented at a local level. This paper addresses this gap of knowledge, by exploring how GSP is implemented in Walsall as a case study. Based on extensive engagement and research activities with the local partners to collect data, this paper reveals the local contexts of GSP, the referral pathways, and people's lived experience, discussing the challenges, barriers, and opportunities in delivering GSP at the local level. This study suggests that a more collaborative and genuine place-based approach is essential, and alongside GSP, investment into infrastructure is needed to move the health paradigm further from 'prevention' to 'promotion' so that more people can benefit from what nature can offer.

Young people's lived experiences shape Scottish suicide prevention strategy

Young people's lived experiences shape Scottish suicide prevention strategy

Youth participatory action research: Integrating science learning and civic engagement

Strengthening young people's scientific literacy and civic engagement are important educational goals for Cooperative Extension. We implemented youth participatory action research (YPAR) projects over three years at five schools. The YPAR approach integrates science learning and civic engagement by empowering youth, with the help of adult facilitators, to decide upon a community issue to research, design and implement their research, and then plan a service project based on research findings to address the issue. We explored young people's and educators' perspectives on which project elements influenced youth participation, examined opportunities for youth science and civic-related learning, and asked educators to reflect on their own learning and development. Using data generated from youth focus groups and educator interviews, we found that YPAR grounds science learning in young people's lived experience. It also provides a meaningful approach to science learning through raising young people's critical consciousness of community issues. YPAR may be used in other extension programs to increase motivation for deeper and sustained participation in learning experiences.

Paremiological analysis of the linguo-cultural concept "Truth"

The article shows that the paremiological picture of the world (from the ancient Greek παροιμία (paroimia) "a parable, a proverb" and λόγος (logos) "a word, a doctrine") is associated with the linguistic picture of the world through proverbs, sayings, slogans, puzzles, and symbols, reflecting traditional ideas based on people's life experience. Paremias are special units and signs of the language, necessary elements of human communication. These signs convey specific information and show vital and mental states or relationships between specific objects. The paremias of all the peoples of the world are situations of the same type, they have the same logical content and differ only in images (details, realities), by means of which the logical content is published and the features of language, thinking, and culture are highlighted. The author analyzed 143 Russian proverbs containing the word "pravda" ("truth"), some of which are presented in the article. The materials of the article can be useful in the framework of the Linguistics major.

Hegemonic Monosexuality

Recent scholarly work has focused on the erasure and mistreatment of bisexuality in histories of sexuality. Such erasure is not only observed in academic work but also in the lived experiences of people who identify as plurisexuals. The present paper brings together studies on bisexuality, hegemony, and sexual politics to explain the discursively produced demarcation between sexualities and forms of sexual expression, and it supports a focus on monosexuality as a theoretical construct that productively addresses issues of discrimination and marginalization that people identifying as plurisexuals endure. What is put forward and challenged through this paper is the functional potential of monosexuality to maintain a sociodicy whereby the nuclear family and its contingent material implications remain not only unchallenged and normative but also inevitable.

Concerns and expectations in women with polycystic ovary syndrome vary across age and ethnicity: findings from PCOS Pearls Study.

To understand and explore the perceptions and opinions of women with polycystic ovary syndrome (PCOS) and further delineate the variations across age and ethnicity. Qualitative survey focussed on lived experiences of people with PCOS. Participants could share their views either as written text or as voice note audio recording(s) on WhatsApp. The data from the audio were transcribed verbatim. Responses were coded by two study members independently, using a thematic inductive method with NVivo 12. Two senior study members then reviewed these codes to identify common themes. Women with PCOS aged 18-60 years. 43 of 45 participants had a formal diagnosis of PCOS, the remaining two had suspected PCOS which was under investigation. Four participants opted to share their views as voice note recordings. Poor mental health was the most reported (83.3% of participants), followed by dermatological (81.0%) and menstrual issues (76.2%). Participants were generally dissatisfied with the care they received (88.1%). A lengthy diagnostic journey was reported in 35.7% of cases. 52.6% felt less feminine, particularly regarding weight gain and infertility. As part of the recommendations by participants, it was emphasised that others with the condition should educate themselves and be proactive in their management. 46.3% reported that being more enlightened regarding their condition improved their health outcomes and enabled them to advocate for their own care. Women in their 20s expressed distress due to poor mental health, needing a longer time to get the diagnosis, and having weight and eating concerns. While women with PCOS in their 30s discussed their menstrual irregularities and fertility issues, those in their 40s expressed their concerns about the societal expectations of women when diagnosed with PCOS. The concerns varied across ethnicities as well. PCOS has wide-ranging consequences for women living with the condition, with many dissatisfied with the clinical support they currently receive. The concerns and expectations vary across ages and ethnicities. Therefore, we propose involving women with PCOS to co-create clinical and educational resources informed by lived experiences to provide end-user-informed services.

Cumulative complexity: a qualitative analysis of patients' experiences of living with heart failure with preserved ejection fraction

Abstract Funding Acknowledgements Type of funding sources: Public Institution(s). Main funding source(s): NIHR, Evelyn Trust, Burdett Trust. Background Multiple investigations have explored the lived experience of heart failure (HF). However, studies have not interrogated whether differences exist according to HF phenotype and the lived experience of people with Heart Failure with preserved Ejection Fraction (HFpEF) remains unexplored. We hypothesised patients with HFpEF may articulate different experiences from those with other forms of HF, given established problems around awareness, diagnosis and management. Purpose To explore how HFpEF impacts upon patients’ lives and interrogate whether and how known challenges impact upon patient experience. Methods Secondary thematic analysis of interview transcripts from 77 people diagnosed with HFpEF and their carers. The analysis was informed by the Cumulative Complexity Model (CCM). Results Four themes underpinned by the CCM were generated. Theme 1: Shouldering a Heavy Workload, described the many health related tasks (patient work) people living with HFpEF were expected to perform. Theme 2: The Multiple Threats to Capacity described how patients tried to perform this work, however, were frequently hindered by challenges such as difficult to manage symptoms or mobility/age-related conditions. Patient work and ability to perform this work were complicated by problems synthesised under Theme 3: Deficient Illness Identity. This theme illustrated how healthcare providers sometimes perceived HFpEF to be a more benign or untreatable form of HF, which could lead to limited access or lower priority for supportive services. Together, themes one to three contributed to a range of negative outcomes captured within Theme 4: Spiralling Complexity. Conclusions HFpEF, multimorbidity and aging cumulatively create multiple demands that people with HFpEF must attend to, whilst they concurrently negotiate symptoms and physical limitations that make this challenging to achieve. Patient work and patient capacity to perform work are impeded by a system that undermines their candidacy for optimum HF care. Such conditions create unfavourable outcomes that will continue, unless system wide change is implemented.

Spontaneous coronary artery dissection in cardiac rehab: an exploration of lived experiences of patients and the knowledge, understanding, and perceptions of healthcare professionals

Abstract Funding Acknowledgements Type of funding sources: None. Background Spontaneous coronary artery dissection (SCAD) is a non-atherosclerotic type of cardiovascular disease (CVD) that affects young and middle-aged women more than men. Many aspects of SCAD, however, remain unclear, including the outcomes of cardiac rehabilitation (CR) and the lived experiences of people with this condition in the programme. Furthermore, the awareness and knowledge of healthcare professionals (HCPs) regarding SCAD may be an important factor in determining patient engagement with rehabilitation services. A longitudinal study examining changes in physical and mental health outcomes of patients with SCAD is yet to be performed. Similarly, an in-depth exploration of HCPs' perspectives on SCAD is also needed. Objectives The objectives of this project are to understand the lived experiences of patients with SCAD, examine the knowledge of HCPs about the management of SCAD, and analyse the outcomes of CR on physical activity, diet, body mass index, waist circumference, stress, anxiety, depression and health-related quality of life upon completion of phase III and phase IV CR, and a year post-event. Methods A mixed-methods longitudinal observational study will be performed with four time points (pre-phase III CR, post-phase III CR, post-phase IV CR, and a year follow-up after SCAD event). Lived experiences of both male and female patients with SCAD, their pathways of care and barriers to engagement to CR will be explored through semi-structured interviews. Physical activity (short-form IPAQ questionnaire), dietary intake, anthropometric measures (waist circumference and body mass index), stress (PSS-10 questionnaire), anxiety (GAD-7 questionnaire), depression (PHQ-9 questionnaire) and health-related quality of life (EQ-5D-5L questionnaire) will be assessed at each timepoint. Patients with SCAD who are not engaged with CR will be used as a control group. Outcome measures will be compared between two groups using a mixed model ANOVA (time x intervention). A qualitative cross-sectional study using semi-structured interviews with HCPs will explore their understanding and management of SCAD. Discussion: The findings of this project will indicate weather current CR needs are met in this patient group and what changes need to be made to existing CR services to improve uptake in patients with SCAD. This could lead to a larger clinical trial that examines the effectiveness of tailored CR for this group of patients. Additionally, the information received from HCPs will indicate if there is an unmet educational need regarding SCAD, which may ultimately lead to better recognition, medical and lifestyle management for this patient group.

Wildlife and human safety in the Tarangire ecosystem, Tanzania

Coexistence of people and wildlife outside protected areas is of critical conservation importance. However, human-wildlife interactions on shared landscapes can produce negative outcomes for wildlife populations and people. This article focuses on the effects of wildlife on local people's lived experiences of physical safety in the Tarangire ecosystem of northern Tanzania. The Tarangire ecosystem supports a diverse array of wildlife species of global conservation significance, encompassing several national parks, community-based conservation areas, forest reserves, and trophy hunting blocks. From the perspectives of local agropastoral Maasai communities, coexisting with wildlife is a routine part of everyday life, though some species are dangerous and pose threats to physical safety. These human security concerns compound the economic impacts of wildlife on local livelihoods, manifest in the forms of crop raiding, livestock depredation, and property damage. Based on mixed qualitative methods including ethnographic fieldwork (2019–2020; 2022; 2023), participant observation, household surveys (n = 1076), and in-depth interviews (n = 240), this paper identifies the species of particular concern to communities. Elephants, spotted hyenas, buffalo, and lions pose significant threats to human security. Venomous snakes and leopards are also safety concerns, but to a lesser degree. The anthropological dimensions of these threats to physical safety are underrepresented in the literature on human-wildlife conflict. This paper spotlights three recent incidents of people being killed by wildlife (elephant, hyena, and lion) in the area, and the psychosocial consequences that have since rippled across local communities. People expressed feelings of fear, resentment, anger, grief, and insecurity born of their experiences coexisting with large nondomestic mammals. Wildlife attacks on people engender material and emotional impacts with traumatic aftereffects. These human dimensions of wildlife are significant for equity reasons in and of themselves, and also for environmental sustainability as they affect people's tolerance for living with wildlife. Greater attention to the lived experiences of local people is needed to improve conservation practice in northern Tanzania.

The impact of engaging with community groups: asset-based approaches and the lived experience of socially vulnerable populations in the UK.

Asset-based approaches to improve citizen wellbeing and address inequalities are now being adopted by public health practitioners. There is some evidence that participatory approaches and the promotion of community assets have the capacity to mitigate against the social determinants that generate health disparities. However, questions remain about how they work in practice. This paper reports on research carried out to provide insight into how a diverse range of community assets support (or not) the wellbeing of vulnerable citizens and to provide an improved understanding of people's lived experiences including the challenges of citizens who belong to community assets face. Two subsequent studies were undertaken in a region of England comprising of two neighboring municipalities where health inequalities are stark. Both municipalities contain within them areas of social deprivation. The initial study was completed in March 2020, 1 week before England's first COVID-19 lockdown restrictions were introduced and the subsequent study was conducted to explore the impact of social restrictions on the community assets forum members. A combined phenomenological and ethnographic methodological approach was adopted for both studies. For the initial study ethnographic methods were used including 42 qualitative face-to-face interviews focusing on the lived experience of participants. Observations, informal conversations, photographs, and field notes were also carried out to allow researchers to become familiar with the setting, to build rapport and trust provide a contextual understanding of the relationship between the activity or place and participants' experiences of wellbeing. For the subsequent study thirty-six interviews (including interviews with community assets leaders) were conducted online or by phone due to COVID-19 social restrictions. The studies' findings support the supposition that these groups are community assets which help ameliorate against the social detriments of health and wellbeing that have led to widening health inequalities in the region. The findings from both studies clearly illustrate the importance of sociality for wellbeing, and that participation in these groups are an important determinant of wellbeing. The data demonstrates how social capital is generated within a range of community groups and spaces. It also conveys the needs and deficits existing within groups highlighting the need to provide more assistance to vulnerable citizens. While most themes were common to all community forums, there were some noticeable place-based differences.

Representations of Mental Illness in a Ga Community in Southern Ghana

This study explored lay concepts about and attributions of mental illness in a Ga community in southern Ghana. The study’s sample consisted of 11 Ga men and 12 Ga women, ranging in age from 30-81. Participants completed one-on-one interviews. Participants ascribed to polyphasic attributions of mental illness including biomedical and spiritual explanations. Attributions informed understandings of help-seeking behavior. Stigma was recognized as an important factor in the lived experience of people with mental illness. The recognition of individual distress as a marker of mental illness seemed less prominent than social indicators. Our interviewees’ narratives highlighted the importance of the social context in identifying and making meaning of mental illness in the community of study.

Use or Misuse of Urban Streets? Exploration of Everyday Urbanism in Traditional City Centres

Urban residents often transform street precincts into places for informal activities through everyday urbanism to meet their daily needs, particularly in traditional city centres. Although strict regulations and control over public space exist, people-centred (bottom-up) interventions usually occur in traditional city centres. While such action exemplifies the rights people claim to suit their requirements and improve the daily living experience, there are arguments that everyday use of the streets generates land-use problems. In this regard, using data collected through questionnaire surveys, observations, and interviews, this study explores the factors that facilitate everyday urbanism and encourage using the streets as public spaces in traditional city centres of Nigeria. This is to provide helpful information that could serve as a tool for putting everyday urbanism into urban planning and design practices. The study established that the three most common street activities in the traditional city centres were informal trading, social events/ceremonies, and cultural festivals. It was also shown that the everyday use of public spaces created a unique setting for social interaction among people and contributed to the liveliness of the city centres. The principal component analysis (PCA) showed that the crucial factors that facilitated and encouraged the everyday use of streets were the economic factor (18.2%), the inadequacy of environmental amenities (17.8%), and culture and social lifestyle (12.2%). This study concludes that everyday urbanism contributes significantly to creating vibrant communities and improving life quality; therefore, it is recommended that the control and management of activities in public spaces should align with people's culture, lived experiences and socioeconomic realities.

TRANSPORTATION BARRIERS CONFRONTED BY MOBILITY-CHALLENGED TRAVELLERS IN KLANG VALLEY

Accessibility enables individuals' full participation in society, which results in social justice and equity, thus promoting social sustainability. However, research indicates that physical barriers in the built environment impede disabled people, resulting in marginalisation when their inclusion is tied to physical space. Commonly, accessibility of the built environment is evaluated using an access audit with a predetermined checklist. Little effort has been made to explore disabled people's life experiences accessing the city centre. This qualitative study involves twenty go-along interviews with mobility-challenged travellers to learn about their experiences using land transportation from around Klang Valley to Kuala Lumpur city centre. Mobility-challenged travellers, notably wheelchair users, still need help to reach their destination with the current transportation services. In general, transportation use in Klang Valley has several issues, including the lack of accessible facilities and lack of safety concerns from service providers. These issues have psycho-emotional impacts on disabled people.

Understanding stigma through the lived experiences of people with opioid use disorder

BackgroundStigma toward substance use disorders reduces treatment seeking and recovery efforts of persons who could most benefit from services. This is particularly true for opioid use disorder (OUD) stigma, which in recent years has likely fueled the overdose epidemic. Understanding the stigma surrounding OUD and stigma reduction efforts that can be implemented are needed to enhance treatment and recovery efforts. This project explores the lived experiences of persons who were in recovery from OUD or a family member of someone with OUD with a focus on stigma. MethodsWe utilized a qualitative method to examine secondary data of published transcripts where people’s (N = 30) experiences with stigma emerged through storytelling. ResultsThematic analysis found three overarching types of stigma that were described by participants, 1) Social stigma: misconceptions contributing to social stigma, labeling and associative stereotypes, persistence of stigma throughout recovery; 2) Self-stigma: internalized feelings due to stigma, concealing and continuing substance use, inadequacies of navigating recovery; and 3) Structural stigma: treatment and recovery resource barriers, challenges of reintegration. ConclusionsThe experiences described by participants highlight the multifaceted impact of stigma on the individual as well as society and add to our understanding of the lived experience of stigma. Future recommendations are discussed to improve the experience of individuals with lived experience of OUD; including implementing evidence-based strategies to reduce stigma such as using stigma-free or person first language, dispelling common myths, and supporting comprehensive recovery pathways.

Investigating SANE’s programs around stigma in the media: exploring media engagement experiences of advocates with lived experience of complex mental illness

ABSTRACT Objective SANE facilitates and supports media engagements with their Peer Ambassadors to help elevate the perspectives and lived experiences of people with complex mental illness. This study aimed to explore Peer Ambassadors’ media engagement experiences to better understand their support needs and facilitate improved preparation for their future media engagements. Methods Peer Ambassadors (n = 10) participated in interviews about their media engagement experiences. Participant responses were inductively coded and analysed thematically. Results Three main themes were identified. These related to factors that motivate and influence media engagement experiences, and lived experience advocates’ support and training needs. These were: Empowerment as motivation to share lived experiences with the media; Openness, flexibility and transparency is needed from journalists to positively influence media engagement experiences; Preparation and support for Peer Ambassadors surrounding media engagements is essential. Discussion Media engagements provide a valued opportunity for Peer Ambassadors to share their experiences with large audiences and generate widespread impact on awareness and public stigma. Recommended practices should focus on providing support and training to lived experience advocates to best equip them for undertaking media engagements. Proactively creating additional media opportunities could be expected to increase the reach and impact, as well as the diversity, of the lived experience stories being shared.

When means‐testing meets work‐testing: A multi‐level institutional analysis of claiming in‐work benefits in Hong Kong

AbstractWhile there is a growing body of literature on the lived experiences of people in poverty, their interaction with the welfare delivery system at different levels is still under‐theorised. This article presents a multi‐level institutional framework to qualitatively study the low‐income families' experiences in claiming in‐work benefits (IWBs). Considering the Low‐income Working Family Allowance (LIFA) in Hong Kong as an extreme case of IWB's residualism and productivism, the findings suggest that LIFA claimants faced cycles of counter‐productive re‐assessment in their everyday frontline practices, and underwent organisational barriers in workplaces and families in collecting the proofs required by the means‐testing and work‐testing procedures. These experiences were linked to Hong Kong's macro‐systemic contexts that prioritised long working hours and strict targeting of low‐wage breadwinners. This study contributes to the literature by linking social policy implementation and welfare delivery to claiming experiences, and empirically reveals the complexities of IWBs using means‐tests and work‐tests.