Lived Experience Research Articles

THE POWER OF PLACE: PSYCHOLOGY, GEOGRAPHY, AND COMMUNITY MEMORY IN IRELAND’S MAGDALENE LAUNDRIES

ABSTRACT This paper examines the complex interplay between memory, place, and the enduring impact of gendered violence in Ireland’s Magdalene Laundries. By adopting a transdisciplinary sites-of-conscience approach that integrates psychology, geography, and community memory, this study explores the relationship between survivors, place, and culture, considering the spatial and societal contexts that shaped their lives. Central to this research is survivor narrative and testimony, which offer invaluable insights into the lived experiences within these institutions. Woven through this discussion, Maureen’s story serves as a poignant illustration of how place and site informed her lived experience in the laundries, and her place-based memories many decades later. By centering Maureen’s voice and exploring the spatial dimensions of her story, this paper aims to challenge dominant narratives and honor the resilience of survivors. Ultimately, this research aims to contribute to a deeper understanding of the Magdalene Laundries as sites of historical injustice and to explore their potential as sites of conscience. By examining the complexities of memory, place, and trauma, this paper seeks to inform future efforts to address the enduring legacies of gendered violence and to create a more just society.

Co-creation in a safe space: Listening to the international student voice

ABSTRACT This article discusses the methodology of a partnership-based collaborative project between investigators comprising two academics and one educational developer and a diverse group of international students studying at a UK University. The students were recruited to co-design a survey instrument to better understand the lived experiences of their peers across the institution, but prior to doing so engaged in a structured process of weekly engagement to create a safe space where they could feel comfortable to explore their own experiences. This produced a rich characterisation of key elements of being an international student, challenging common narratives of deficit and passivity, as well as a successful ‘students-as-partners’ approach that transcends assessment or curriculum design settings. Thereby, the paper offers a case study for empowering co-creation partnerships with overlooked or marginalised student groups by embracing principles of safe spaces and belonging for participants, thus contributing to an understudied element of co-creation scholarship.

Risk management in Moroccan public hospitals: a literature review.

The objective of this review is to provide a comprehensive analysis of risk management practices in the healthcare sector, with a particular focus on identifying challenges and strategies in Moroccan hospitals. A literature search was carried out on several academic search engines using search terms reflecting the relationship between risk management and public hospitals in Morocco. The Moroccan public hospital is confronted with several disjunctions, which can be sources of multiple risks. This influences the quality of care provided to patients and can sometimes threaten their vital prognosis. The risk management process can help health professionals, researchers and risk managers to be agile and identify and anticipate risks in order to avoid serious accidents that can affect the whole organization, especially after the pandemic lived experiences (COVID-19). Protecting human life in an environment where risks are omnipresent is a dilemma that every hospital organization must confront. So, risk management in the hospital is not a simple process, given the interaction of several components and the sensitivity of the field. Risk management in this establishment must be rigorous because every error can cost human life. In this sense, the analysis of risk management processes in Moroccan hospitals, based on what really exists, enables the identification of shortcomings in order to master the risk management system and thus protect goods and services as well as human life, which is the ultimate goal of the hospital organization's existence.

Embracing the complexity of lived experiences in psychiatry research: Reflexivity, cultural sensitivity, and emergent design

This article examines the critical integration of reflexivity, cultural sensitivity, and emergent design in qualitative psychiatry research focused on lived experiences. While quantitative methods offer essential clinical insights, qualitative approaches provide a deeper understanding of the emotional, psychological, and social dimensions of mental health. Reflexivity enables researchers to remain aware of how their personal biases and professional backgrounds shape data interpretation. Cultural sensitivity ensures that mental health conditions are understood within their broader cultural contexts, helping avoid misrepresentation and promoting authentic participant expression. Emergent design offers flexibility in adapting the research process to evolving themes, particularly in the dynamic and multifaceted realm of psychiatric conditions. Together, these principles promote ethically sound, participant-centered research that captures the full complexity of lived experiences. The article also highlighted the practical implications of these principles for enhancing both academic knowledge and clinical practice in psychiatry.

Popular conservatisms and the structure of Russian society

ABSTRACT The literature on Russia’s conservative turn focuses on the state program to embed conservative values in a top-down process of narrative construction that links shared history, lived experiences, and events. Relying on the unique LegitRuss survey evidence collected in 2021, we complement this research by exploring how values-based cleavages structure Russian society, bind distinct social groups, and reflect congruence between the Kremlin’s conservative messaging and popular political attitudes. The results show that values do define groups in society and that conservatives constitute a majority in Russian society. Yet, state conservatives are internally divided around a spectrum of conservative beliefs, and only one-third adhere to the Kremlin’s ideal conservative type. While this core is an important tool for Kremlin efforts to control society, project support, and manufacture electoral majorities, it reflects the limits authoritarians face when they try to impose a unitary set of national values.

Experiences of indigenous women of New Zealand (Māori) in engineering and engineering trades

ABSTRACT To address the underrepresentation of Māori women in engineering and engineering trades, it is imperative to understand the experiences of those already engaged in these fields. This study focuses on the lived experience of five Māori women in New Zealand and hopes to inspire more Māori women to join these professions. The study explored three pivotal phases of women’s lives through in-depth interviews: background and upbringing, experiences during education, and encounters in the profession. The research aims to identify barriers encountered by these women and the strategies they employed to navigate their journeys. Common themes, which emerged from this study include identity development, stereotyping, cultural identity, determination, and support and encouragement. Lack of information about different careers in schools has resulted most participants taking an indirect pathway to their professions. This underscores the significance of offering timely career guidance in schools about different professions. The study also highlights the importance of dismantling gender stereotypes from an early age and engaging in hands-on activities to ignite women’s interest in engineering and engineering trades. These stories illustrate how resilience and support networks empower women to achieve professional success, emphasising the significance of respecting cultural identity for fostering equity and inclusion.

Queer Theology on Social Media: A Reflection on Queer Pastoral Influencers on Instagram

Abstract The field of Queer Theology can be enhanced by qualitative research on queer lived experiences. The present article addresses this through exploratory observations. The authors examine how two queer pastors (@amen_aber_sexy and @tovja_behuetet) express queer issues on Instagram, interact with Christian tradition, and engage in Queer Theology. Within the scope of this article, Instagram emerges as a productive space for lived Queer Theology based on Felix Stalder’s principle of referentiality.

“I am worried she won’t live that long:” Voices of adolescent well-siblings of individuals living with complex congenital heart defects

ABSTRACT Well-siblings of individuals with chronic illnesses face unique stressors which can adversely affect their mental health outcomes. There is limited research regarding experiences of well-siblings living with individuals diagnosed with complex congenital heart defects (CCHD). Using a phenomenological approach this qualitative study explored the lived experiences of six 12–17-year-old, non-Hispanic white well-siblings of individuals living with CCHD. The participants lived in southeastern United States. Data were collected using two semi-structured interviews, a health literacy questionnaire, and two standardized mental health screening tools. Three overlapping themes were developed from the data, namely viewpoint of daily life, understanding of the sibling’s heart diagnosis, and well-sibling’s social support. Results suggested that the participants had varied levels of understanding of their sibling’s CCHD, perceived differential parental treatment, and reported feelings of rivalry and jealousy. They worried about adverse health outcomes for their sibling with CCHD, including worrying about their death. Mothers and close friends were identified as sources of support. This study confirmed that experiences of well-siblings are layered, complex, and could be impacted by a range of factors including their health literacy and support from family, friends, and professionals. This study raises more questions and implications for future research are provided.

Key informant perspectives of suicide prevention in Australia

BackgroundSuicide prevention policy in Australia is in a period of reform. The National Suicide Prevention Office is leading the development of a new National Suicide Prevention Strategy (Strategy). Stakeholder input is a critical element in the development of the new Strategy. This article describes key informant views about government-led suicide prevention efforts in Australia obtained as part of an environmental scan conducted as one input to inform the Strategy development process.MethodsWe interviewed 24 key informants in November and December 2022. Key informants were purposively recruited to ensure representation from cross-jurisdiction government departments/agencies, peak bodies and leaders in the suicide prevention sector, people with lived experience of suicide, and suicide prevention researchers. We enquired about successes, challenges, and opportunities. NVivo was used to conduct thematic analysis.ResultsKey themes identified as successes in Australia’s suicide prevention efforts included: leadership and funding for programs, services, and research; valuing the collective lived experience voice; moving towards a whole-of-government/system approach; and high community and political suicide (prevention) awareness. Key themes emerging as challenges in the sector were: defining the suicide prevention sector, limitations in the service system, workforce issues, and building the evidence base. Key themes mentioned as opportunities for improving suicide prevention efforts were: leveraging the current unprecedented awareness and desire for collaboration among multiple stakeholder groups; adopting wellness rather than crisis-driven models of care; including lived experience and co-design in all stages and aspects of policy planning, service development, and evaluation; and investing in data, research, and evaluation.ConclusionsKey informants from across the suicide prevention sector in Australia identified a range of issues for consideration in the development of Australia’s new National Suicide Prevention Strategy which are also relevant for suicide prevention policy and program development in other high-income countries. Key issues include the need for concerted efforts to define and build the capacity of the suicide prevention sector, implement and monitor a whole-of-government approach that includes wellness models of care and lived experience, and bolster the evidence base. These efforts require effective leadership and resourcing.

“Are we genuinely going to have our voices heard?” The experience of co-producing a blended intervention to prevent relapse in obsessive-compulsive disorder: a qualitative study on the perspectives of experts by lived experience

IntroductionCo-production involves researchers, practitioners and people with lived experience working in a collaborative manner, with shared power. The potential benefits of co-production are well documented. However, there is little research describing the experience of having been involved in co-production from the perspective of Experts By Lived Experience (EBLE). The aim of the present study is to explore the experiences of EBLE of obsessive-compulsive disorder (OCD) on their involvement in co-producing a blended intervention to prevent relapse for OCD.MethodsFive EBLE took part in semi-structured interviews enquiring about their experiences of co-producing a relapse prevention intervention. Reflexive thematic analysis was used to analyse the data.ResultsFour themes were developed: (1) Welcome but unexpected therapeutic benefits; (2) The parameters of a safe space; (3) Genuine co-production brings meaningful change; and (4) Navigating the challenging terrain of co-production.ConclusionsOverall, EBLE reported their involvement in the co-production process to have had positive impacts on both the development of the intervention and their own personal recovery journey. EBLE valued the safety created within the group, and the importance this had for allowing them to speak open and honestly about their experiences and the difficulties that can arise with the nature of the work.

Co-creation of a qualitative fertility research study to understand waiting time experiences through patient engagement

BackgroundInfertility affects an estimated 8 to 12% of the global population and approximately one in six heterosexual couples in Canada. To access fertility services in Newfoundland and Labrador, Canada, individuals with an infertility diagnosis wait for extended periods, and this waiting period has been associated with psychological distress. However, this experience of waiting has not been well studied, and several gaps in fertility research exist. The inclusion of persons with lived experience of infertility in the creation of studies related to infertility may improve research outcomes and create patient empowerment.AimTo collaboratively develop a qualitative research project focused on understanding the waiting experiences of patients seeking fertility services in Newfoundland and Labrador, utilizing patient engagement initiatives and involving individuals with infertility experiences.MethodsThree patient partners who represented individuals awaiting fertility services were recruited to be research team members. Patient partners were eligible to participate as research team members if they identified as either female or non-binary (to effectively represent the female and non-binary target population in the co-produced qualitative study) and had lived experience waiting for fertility services in the province. The research team developed a detailed patient engagement plan following the International Association for Public Participation framework (IAP2). Data from research team discussion groups were documented using a meeting minutes template. Two questionnaires from the Public and Patient Engagement Evaluation Tool were employed to assess patient partners’ impact and satisfaction with the research process.ResultsPatient partner involvement and input helped the co-creation process by refocusing the qualitative study’s research aim to empower patients. To accomplish the new research aim, the patient partners refined the study’s methodology through adjustments to the research design, protocol, interview guide, and participant criteria of the upcoming qualitative study. The PPEET analysis demonstrated high satisfaction with engagement and a high perceived value of patient contributions in the co-creation of the research study. In turn, the PPEET results indicated that patient partners had a comprehensive understanding of their roles for engagement and were satisfied with their involvement in the various research activities.ConclusionsIn conclusion, using patient engagement to co-create a qualitative fertility study to understand patients’ experiences while waiting for fertility services resulted in significant changes to the proposed methodology and research priorities and helped address knowledge gaps in existing fertility research. Most importantly, the patient engagement approach helped foster an inclusive and empowering environment for patient partners to contribute to fertility research.

The impact of living with multiple long-term conditions (multimorbidity) on everyday life – a qualitative evidence synthesis

BackgroundMultiple long-term conditions (MLTCs), living with two or more long-term conditions (LTCs), often termed multimorbidity, has a high and increasing prevalence globally with earlier age of onset in people living in deprived communities. A holistic understanding of the patient’s perspective of the work associated with living with MLTCs is needed. This study aimed to synthesise qualitative evidence describing the experiences of people living with MLTCs (multimorbidity) and to develop a greater understanding of the effect on people’s lives and ways in which living with MLTCs is 'burdensome' for people.MethodsThree concepts (multimorbidity, burden and lived experience) were used to develop search terms. A broad qualitative filter was applied. MEDLINE (Ovid), EMBASE (Ovid), PsycINFO (EBSCO), CINAHL (EBSCO) and the Cochrane Library were searched from January 2000-January 2023. We included studies where at least 50% of study participants were living with three or more LTCs and the lived experience of MLTCs was expressed from the patient perspective. Screening and quality assessment (CASP checklist) was undertaken by two independent researchers. Data was synthesised using an inductive approach. PPI (Patient and Public Involvement) input was included throughout.ResultsOf 30,803 references identified, 46 met the inclusion criteria. 31 studies (67%) did not mention ethnicity or race of participants and socioeconomic factors were inconsistently described. Only two studies involved low- and middle-income countries (LMICs). Eight themes of work were generated: learning and adapting; accumulation and complexity; symptoms; emotions; investigation and monitoring; health service and administration; medication; and finance. The quality of studies was generally high. 41 papers had no PPI involvement reported and none had PPI contributor co-authors.ConclusionsThe impact of living with MLTCs was experienced as a multifaceted and complex workload involving multiple types of work, many of which are reciprocally linked. Much of this work, and the associated impact on people, may not be apparent to healthcare staff, and current health systems and policies are poorly equipped to meet the needs of this growing population. There was a paucity of data from LMICs and insufficient information on how patient characteristics might influence experiences. Future research should involve patients as partners and focus on these evidence gaps.

Exploring the subjective experience of researchers and co-researchers with lived experience of psychosis high risk states: a qualitative analysis within a participatory research process

BackgroundThe involvement and engagement of people with lived experience is considered increasingly important in health research. A growing corpus of literature on the involvement of people with lived experience of mental health conditions, including people at psychosis high risk states, can be found. This study aims to explore the subjective experience of researchers and co-researchers with lived experience of psychosis high risk states who were involved in a participatory research project.MethodsIn this study with a combined participatory and qualitative research approach, we used a reflexive thematic analysis approach to systematically analyse open reflection reports from researchers and co-researchers with lived experience of psychosis high risk states, who took part in a participatory research project (VOICE). All participants (n = 12) were asked to anonymously write reflection reports on their subjective experience of participatory research. There were no formal or content-related instructions for writing the reflection reports. Reflection reports provided by eight participants were qualitatively analysed.ResultsThree themes were identified from the analysis of the reflection reports. First “When uncertainty becomes a unifying element – reflecting on expectations and roles”. Second “Fostering community growth: creating an environment for collaborative teamwork as well as new and creative directions”. Third “Exploring personal and scientific achievements of the project”. At the outset of the research project, the researchers’ focus was on expectations and reflections on their role within the project, accompanied by a feeling of uncertainty. Subsequently, a sense of community developed within a favourable study framework. Finally, attention focused on research project outcomes and personal achievements within the project.ConclusionThe analysis of the anonymous reflection reports on a participatory research project indicates that there was a positive collaboration between participants with and without lived experience of psychosis high risk states, wherein they were able to interact on an equal footing. Participants reported an experience of equal cooperation and gained relevant personal insights from project participation. Although we do not have clear evidence of experiences of power imbalances or perceived hierarchies based on the analysed reports, these cannot be ruled out and have to be addressed in future research.

PERILAKU POLITIK PEREMPUAN TANI DALAM PILKADA LANGSUNG: Studi di Kecamatan Konda Kabupaten Konawe Selatan

This study aims to explore deeper the motivations, attitudes, and political preferences of women farmers in direct regional elections, and how social, economic, and cultural factors influence their political behaviour. This study is a qualitative descriptive study, with a case study approach. This study uses a qualitative research method. The methods used to collect data in this study are: observation, interviews and documentation. The results of the study indicate that the motivations, attitudes, and political preferences of women farmers in direct regional elections are greatly influenced by social, economic, and cultural factors. The majority of women farmers choose candidates who are considered capable of supporting family needs and improving community welfare. Their political attitudes are also shaped by their life experiences, social interactions, and roles in the family. Policies that focus on the economic empowerment of women farmers, such as increasing employment opportunities or skills training programs, often attract their attention. These preferences are not only the result of urgent needs but also a reflection of women farmers' aspirations to improve the standard of living of their families and their environment.

The trials and triumphs of co-producing an evaluation plan: A principles-focused evaluation

BackgroundRecovery Colleges are mental health-oriented education programs that are rooted in principles of peer support and co-production. Co-production, in this context, involves people with lived experience of mental health and addiction challenges and people with other forms of expertise (e.g., mental health professionals, administrators, and researchers) collaborating on the design and actualization of programs and initiatives. Despite co-production being a central feature of Recovery Colleges, very few Recovery College evaluations appear to be co-produced. In addition, there is a lack of research that evaluates the quality of the co-production processes in developing evaluations. The Recovery College at the Centre for Addiction and Mental Health, called the Collaborative Learning College, established an Evaluation Subcommittee with the goal of co-designing and implementing an evaluation plan for the program. In response to the dearth of literature on co-producing Recovery College evaluations and the quality of such collaborative processes, the Evaluation Subcommittee conducted a principles-focused evaluation to assess the quality of their process of co-producing an evaluation plan.MethodsAll members of the Evaluation Subcommittee collaboratively developed and agreed on three principles that they felt were most important in their co-production process. Using a self-narrative approach, each member then produced a reflection on the importance of the principles, the degree to which the committee adhered to them, and the impact. Finally, members engaged in collaborative thematic analysis and co-wrote this manuscript.ResultsThe results of this study outline member’s purposes for joining the Evaluation Subcommittee, the strengths and challenges related to embodying the collaborative principles, and the associated impacts.ConclusionsThe findings demonstrate the value of co-producing health education evaluations with people with lived experience and highlight important lessons learned through the Evaluation Subcommittee’s collaborative process, specifically related to mitigating the impacts of power imbalances. These lessons can be valuable for others to consider in their co-production processes.

Caregiving in Asia: Priority areas for research, policy, and practice to support family caregivers

AbstractPopulation aging presents a growing societal challenge and imposes a heavy burden on the healthcare system in many Asian countries. Given the limited availability of formal long‐term care (LTC) facilities and personnel, family caregivers play a vital role in providing care for the increasing population of older adults. While awareness of the challenges faced by caregivers is rising, discussions often remain within academic circles, resulting in the lived experiences, well‐being, and needs of family caregivers being frequently overlooked. In this review, we identify four key priority areas to advance research, practice, and policy related to family caregivers in Asia: (1) Emphasizing family caregivers as sociocultural navigators in the healthcare system; (2) addressing the mental and physical health needs of family caregivers; (3) recognizing the diverse caregiving experiences across different cultural backgrounds, socioeconomic status, and countries of residence; and (4) strengthening policy support for family caregivers. Our review also identifies deficiencies in institutional LTC and underscores the importance of providing training and empowerment to caregivers. Policymakers, practitioners, and researchers interested in supporting family caregivers should prioritize these key areas to tackle the challenge of population aging in Asian countries. Cross‐country knowledge exchange and capacity development are crucial for better serving both the aging population and their caregivers.

Conceptualising Black (Co-)Reflexive Feminist Methodologies: Collaboration, Process and Critical Friendship

This article situates Black feminist research on race and class as a pre-determined collaborative process, which builds on a plethora of existing scholarship as well as on the relationships and wisdoms of others. We want to pay homage to the way we arrive at our ideas about social life together. We see lived experience(s) as a fundamental aspect of our work as social scientists and Black feminist practitioners, but also acknowledge the pitfalls of this approach. Using Bryel’s transcriptions of Chantelle’s ethnographic research with Black and Black mixed-race families as an example, we aim to bring a fresh perspective to this long-standing approach, while emphasising that this leaves us open to the creation of over-individualised accounts of often-marginalised social lives. We hope to further discourses that acknowledge and celebrate the numerous, complicated and personal pathways taken by researchers as they analyse their data, specifically in methodologically insider–outsider encounters.

Stroke survivors’ perceptions of living with disability in urban Ghana- a qualitative study

BackgroundStroke prevalence is one of the most pressing issues in many sub-Saharan African countries. Stroke survivors often face disabilities, mental health problems, and experience stigma. Research on post-stroke experiences and interventions is limited, particularly in low and middle-income countries, including Ghana. This study aims to contribute to this gap by investigating experiences of everyday life following a stroke in urban Ghana.MethodA qualitative in-depth study involving 14 interviews with stroke survivors who attended physiotherapy at Accra Physiotherapy and Sports Injury Clinic. Qualitative analysis was conducted to analyse the data.ResultsData analysis generated four themes; [1] Mobility limitations; [2] Psychosocial burden [3] Employment Limitations [4] Financial burden.ConclusionStroke survivors with disabilities perceive themselves as non-functional members of society, which limits their options for a normal life and undermines their well-being. A more in-depth understanding of these issues can contribute to strategies, interventions, and policies that address these problems.

Simulation-Based Learning About Care of People With Disabilities: An Integrative Review.

An estimated 44.1 million US citizens are living with disabilities. People with disabilities are at higher risk for health problems, affecting their overall quality of life and care experience. Simulation-based learning (SBL) enables students to apply cognitive, affective, and psychomotor competencies through simulated experiential activities in realistic environments. Research is limited on the integration of disability into SBL nursing education. To appraise and synthesize extant literature on the integration of disability in SBL in prelicensure nursing programs. This review identified and synthesized 18 research articles describing the implementation of disability SBL in prelicensure nursing programs. Four themes were identified substantiating the importance of integrating disability into SBL: knowledge and understanding, communication confidence, empathy, and enlightened attitudes. Disability SBL strategies are integral to achieving learning outcomes related to patient-centered care. Large well-designed studies are needed to measure its effectiveness.

Defining harmful news reporting on community firearm violence: A modified Delphi consensus study.

Community firearm violence (CFV), including fatal and non-fatal shootings that result from interpersonal violence, disproportionately harms people from marginalized racial groups. News reporting on CFV can further exacerbate these harms. However, examining the effects of harmful news reporting on CFV on individuals, communities, and society is hindered by the lack of a consensus definition of harmful reporting on CFV. In this study, we aimed to define harmful reporting on CFV. We used a modified, three-round Delphi process to achieve consensus among diverse stakeholders. Round 1 sought to assess consensus on 12 potentially harmful news content elements for three levels of harm (individual, community, and society). Round 2 invited panelists to rate the severity of each news content element at each level of harm. Round 3 asked panelists to agree or disagree with the panel's median severity rating of each element at each level of harm. Twenty-one panelists were recruited from three expertise groups (lived experience of CFV, journalism practice, scholarship) and all panelists completed all three rounds. In Round 1, no negative consensus was achieved for any of the proposed news content elements. In Round 2, panelists assigned moderate to severe harm ratings for all but two news content elements, and median harm ratings for each element varied across the different levels of harm. In Round 3, panelists reported high levels of agreement for each harm rating at each level. This modified Delphi process yielded a definition of the 12 elements that comprise harmful news reporting on CFV and severity ratings of harm caused by each element at each level according to expert consensus. Future work will use these results to evaluate and intervene on harmful reporting on CFV. Reducing harm from reporting on CFV can help address this health disparity and support evidence-based approaches to this urgent public health issue.