Shared Experience Research Articles

Shared Book Reading Experiences for Young Children Who Use Augmentative and Alternative Communication Systems

Shared Book Reading Experiences for Young Children Who Use Augmentative and Alternative Communication Systems

A Qualitative Study of Facilitators, Barriers, and Gender Disparities in Academic Neurology.

To understand the challenges and facilitators of a successful academic neurology research career broadly and to identify gender-based disparities specifically. In 2019, participants self-identifying as researchers, preregistered for the American Academy of Neurology (AAN) Annual Meeting, ≥7 years out of residency, and authors of ≥1 AAN meeting abstract submission (2006-2009) were selected to participate in the qualitative study (purposeful sampling strategy). To increase diversity, 15 participants were invited by members involved in the AAN until interviews were complete. The AAN at the time of the study asked gender using sex-based terms. Participants were asked predetermined and open-ended questions. Themes were generated using a flexible coding methodology. Sixty neurologists (31 women, 29 men) participated in the focus groups and individual interviews. Six predetermined domains relevant to a successful neurology research career were explored: success definitions, facilitators, barriers, biases and harassment, mitigation strategies, and participant recommendations. Gender-based differences were noted during discussions focused on barriers and biases and harassment. Lack of women mentors, under-representation of women in senior faculty positions, and competing responsibilities when children are young were identified as barriers to women's success. Participants acknowledged that known gender disparities in compensation, academic promotion, and publications disproportionately affect women. Women shared more experiences of bias and harassment. Some men felt that gender-based biases were minimal to nonexistent. Participants shared their recommendations on ways to mitigate gender disparities and pursue a neurology research career. Leadership involvement locally and nationally in advocating and implementing change outside academic institutions was also mentioned as being valuable. Our findings may not be generalizable to academic neurologists outside the United States. Women academic neurology researchers experienced disparities across several domains affecting success: lower compensation, fewer women mentors, bias, and harassment. Women are less likely to be promoted, have less research success, and job satisfaction. Shared experiences of bias and harassment among women neurology researchers indicate continuing opportunity for education among departments and colleagues for preventive measures. These qualitative results indicate gender disparities among US-based neurology researchers and highlight the importance of the continued need to work toward equality and equity in disparate gender-related issues in the careers of neurology researchers.

Evaluating fall event definitions relative to lower limb prosthesis users’ lived experiences

Purpose Evaluate specific elements of previously proposed fall and near-fall definitions to determine whether they fully capture lower limb prosthesis (LLP) users’ lived experiences. Methods Semi-structured interviews were conducted with 24 LLP users. Interview transcripts were reviewed, coded, and analyzed using deductive thematic analysis to identify shared experiences and inform revisions to previously reported definitions. Results Four major themes emerged: a fall can be initiated by more than just a loss of balance, loss of balance and losing balance are considered similar, falls are not limited to landing on the ground or floor, and catching yourself and recovering your balance are distinct responses to a loss of balance. Conclusions Two revisions were made to previous definitions to better align with LLP users’ experiences and historically overlooked fall circumstances. A fall is defined as a loss of balance or sudden loss of support where your body lands on the ground, floor, or another object. A near-fall was defined as a loss of balance where you caught yourself or recovered your balance without landing on the ground, floor, or another object. Implementation of these new definitions will aid the collection of accurate, consistent, and meaningful fall data, enhancing aggregation and comparison across studies.

Aphasia and acute care: a qualitative study of family perspectives

ABSTRACT Background The early acute phase of hospitalization after the onset of aphasia is typically a challenging and stressful time for caregivers and family members of people with aphasia. During this time, it is particularly important to provide support and relevant information to family to reduce psychological distress and increase the likelihood of longer-term positive outcomes. However, families of people with aphasia often report a lack of support and information within the acute care setting and a generally negative experience. Aims To gather information and insights into the acute care experiences of families of people with aphasia as an early step in a larger project. The larger project was designed to improve the acute care experience for people with aphasia, families, and healthcare staff in a community teaching hospital. Methods A qualitative investigation including text-based questionnaires and in-person focus groups was conducted with 16 family members of people with aphasia. Thematic analysis was completed to identify experiences in early acute care. An additional 7 family members served as “checkers” to validate that the derived themes were consistent with their own experiences during acute hospitalization of their family member with aphasia. Results Six themes were identified that described shared experiences of the participants. The themes (drawing from quotes of participants) include: “At first it’s just survival”; “There’s nothing for the family”; “They did not use the word aphasia at the beginning”; “They did not give me any information about it [how to communicate]”; “They did not really communicate with him [the person with aphasia]”; “They do not want to give you hope”. The themes were endorsed by the family checkers. Conclusions This initial phase of a larger project found that participating families of people with aphasia were not given sufficient support or information, contributing to a largely negative experience of the early acute phase of care.

Increasing the Efficiency of Lifestyle Medicine Counseling: A Visual Approach.

Description Too much to counsel on, too little time? We would like to present a unique and innovative perspective on lifestyle medicine counseling through the lens of a homemade flyer, designed to bridge the gap between conventional health care practices and personalized, holistic well-being. In the promising field of health care humanities, the homemade lifestyle medicine flyer serves as a tangible manifestation of individual agency in promoting health and vitality. The flyer encapsulates a diverse range of self-care practices, dietary insights, and mindfulness techniques, emphasizing the inherent connection between mind, body, and spirit in one's health journey. This double-sided document highlights the significance of empowering individuals to take an active role in their own health journey. Included are a broad range of tips for building a solid health and well-being foundation, as well as a QR code with resources to make those changes happen. Patients may understand that they need to eat healthy foods and spend time outdoors but may not know how best to implement those changes in their area. Although there is limited time for the average office visit, something as simple as a visual aid can go quite far in creating ripples of change beyond the clinic. As a take-home document, it can become an opportunity to share and empower others in the patient's own sphere of influence as well. The flyer acts as a tangible artifact, becoming a conduit for fostering a sense of community engagement, encouraging dialogue, and promoting shared experiences in the pursuit of well-being.

The emergency medical teams initiative in the WHO African region: a review of the development and progress over the past 7 years.

The WHO Emergency Medical Teams (EMT) Initiative coordinates the deployment of qualified medical teams who promptly respond to public health emergencies (PHEs) and provide quality service during emergencies whilst strengthening capacity. Globally, 40 EMTs have been classified between 2016 and the present (as of the writing of this article in December 2023) and are from across all the WHO regions except the WHO Africa Region (AFRO). However, WHO Africa has prioritised the implementation of EMTs in 10 priority countries to address the public health emergencies (PHEs) affecting the region. This article describes the development and progress of national EMTs in the WHO African Region over the past 7 years and elucidates the main lessons learned and the complexity and challenges in the process. This study employed a case study approach because of its appropriateness in examining a complex social phenomenon in a socio-political context in depth, using multiple lenses simultaneously. Data and information were obtained through document reviews and key informant interviews (KIIs) (n = 5) with the members of the EMT Initiative on shared field experiences. Data were systematically analysed using the Stages of Implementation Completion (SIC) framework, and the lessons learnt were presented using components of a framework from Adini et al. The Initiative commenced in the WHO African Region following its launch in December 2017 in Senegal. The assessments of the concept's engagement (involved learning and deciding), feasibility (reviewing expectation and capacity), and readiness planning (collaborating and preparing) showed that the context-specific (African context) challenges, lessons from different emergency response actions mainly guided the Initiative's pre-implementation phase in the region and prompted the WHO emergency leadership on the urgency and need for the EMT concept in the region. The assessment of the implementation processes showed progress in key areas, with staff demonstrating improved competency, EMT services maintaining high fidelity, effective consultation launching critical components, and ongoing services providing successful support and monitoring. Creating the N-EMTs and revitalising the EMT concept required an aligned strategy with other regional emergency programmes and a futuristic vision. Proposed sustainability and governance components include creating N-EMT, developing a coordination structure, collaborating with partners, and finalising the N-EMT. The Initiative is an imperative component that would allow better-targeted management of health emergencies in the region. The continuous refinement of the EMT initiative is crucial. There is a need to work on additional components, such as a context-specific framework for collaborations and partnerships that would enhance deployment and procurement modalities and the complementarity between other regional initiatives to improve the work. Emphasis should be placed on strengthening local health systems, enhancing training and capacity-building programmes, and fostering regional and international collaborations. Additionally, sustainable funding and resource allocation are essential to ensure the resilience of EMTs in the African region and their long-term success.

The Role of Management Psychology in Forming Attachment and Motivation for Organizational Performance

Management psychology is a management discipline that uses a psychological approach to understand the personality of each person in an organization. Psychological factors influence individual performance, communication patterns, and interactions in the work environment. The aim of this research is to explain the role of managerial psychology in shaping engagement and motivation for organizational performance. This research uses a literature review method from various books, articles and research reports. The results of the literature review conducted show that a supportive work environment can only be built through good leadership practices. Good leadership practices can be identified from how leaders manage communication and interaction patterns to meet the needs and expectations of each individual. These needs and expectations are met through a fair and humane approach to all members, clear career paths, rewards for work performance, quality development programs, objective job evaluations, and follow-up on job evaluation results. Leaders cannot create a comfortable work environment unless they earn the trust and loyalty of members. Trust can only be obtained when leaders care about all their members, are willing to accept opinions and suggestions, and are willing to share experiences with their members.

Differences in early life cognitive function explain the association between low education and early dementia risk.

Major initiatives are currently attempting to prevent dementia by targeting modifiable risk factors. Low education is frequently pointed to as a potential key factor, due to its robust relationship with dementia risk. Impact of education is notoriously difficult to assess, however, because of associations with multiple other risk and protective factors, and large population-representative samples are required to tease the relationships apart. Here, we studied 207,814 Norwegian men born between 1950 and 1959 who underwent compulsory cognitive testing during military conscription as young adults, to systematically test associations of education, cognition, and other potentially important factors. While low education was associated with increased risk for dementia diagnosis (Hazard ratio [HR] = 1.37, CI: 1.17-1.60), this association was fully explained by earlier cognitive test scores (HR = 1.08, CI: .91-1.28). In contrast, low cognitive score was associated with double risk of later dementia diagnosis, even when taking education into account (HR = 2.00, CI: 1.65-2.42). This relationship survived controlling for early-life socioeconomic status and was replicated within pairs of brothers. The latter finding suggests that genetic and environmental factors shared within families, such as common genetics, parental education, childhood socioeconomic status, or other shared experiences, cannot account for the association. Rather, independent, non-familial factors are more important. In contrast, within-family factors accounted for the relationship between low education and diagnosis risk. In conclusion, implementing measures to increase cognitive function in childhood and adolescence appears to be a more promising strategy for reducing dementia burden.

Localised precarity in social media entertainment: YouTubing in Turkey

This article examines precarious working conditions for YouTube content creation in Turkey. Creator studies have extensively examined creator precarity within the context of platform architectures and the broader social media entertainment industries. Instead of applying this lens to YouTubing in Turkey to highlight shared precarity experiences of Turkish creators with other YouTube production cultures, I focus on localised precarity to examine how creator labour is made less stable by geographical context. Drawing on in-depth interviews with creators, the research findings demonstrate that there are multiple sources of precarity associated with localised YouTube revenues in an unstable national economy, restrictive internet governance at nation-state level, and culturally situated creator–audience relations.

"And Now that I Feel Safe…I'm Coming Out of Fight or Flight": A Qualitative Exploration of Challenges and Opportunities for Residents' Mental Health in Substance Use Recovery Housing.

Co-occurring mental health concerns are prevalent among substance use recovery housing residents. We sought to explore how residents with co-occurring mental health and substance use needs experience recovery housing. We conducted semi-structured interviews with residents (N = 92) in recovery homes across Texas and developed themes through thematic analysis. Residents note that living in a group home can exacerbate anxiety and paranoia, especially during periods of high turnover. Overwhelmingly, however, residents believe recovery housing improves their mental health. Residents use their shared lived experiences to support one another. Residents also express appreciation for the transition period offered by recovery housing, allowing them to solidify their recoveries before fully re-entering society. Participants describe recovery homes as a critical support for their co-occurring mental health and substance use concerns. These results provide key insights on how to better support mental health in recovery housing.

Stigma in Pediatric Cancer: An Exploratory Study of Osteosarcoma and Retinoblastoma in Guatemala, Jordan, and Zimbabwe.

Stigma is an understudied barrier to health care acceptance in pediatric oncology. We sought to explore the stigma experience, including its impact on cancer treatment decision making, and identify strategies to mitigate stigma for patients with osteosarcoma and retinoblastoma in Guatemala, Jordan, and Zimbabwe. Participants included caregivers, adolescent patients (age 12-19 years), and health care clinicians. A semistructured interview guide based on The Health Stigma and Discrimination Framework (HSDF) was adapted for use at each site. Interviews were conducted in English, Spanish, Arabic, or Shona, audio-recorded, translated, and transcribed. Thematic analysis focused on stigma practices, experiences, outcomes, drivers, mitigators, and interventions. We conducted 56 interviews (28 caregivers, 19 health care clinicians, nine patients; 20 in Guatemala, 21 in Jordan, 15 in Zimbabwe). Major themes were organized into categories used to adapt the HSDF to global pediatric cancer care. Themes were described similarly across all sites, ages, and diagnoses, with specific cultural nuances noted. Pediatric cancer stigma was depicted as an isolating and emotional experience beginning at diagnosis and including internalized and associative stigma. Stigma affected decision making and contributed to negative outcomes including delayed diagnosis, treatment abandonment, regret, and psychosocial fragility. Overcoming stigma led to positive outcomes including resilience, treatment adherence, pride, and advocacy. Identified stigma drivers and mitigators were linked to potential interventions. Participants describe a shared stigma experience that transcends geography, cultural context, age, and diagnosis. Stigma manifestations have the potential to impact medical decision making and affect long-term psychological outcomes. Stigma assessment tools and interventions aimed at stigma mitigation including educational initiatives and support groups specific to pediatric cancer should be the focus of future research.

Elevating Students’ Shared Learning Experiences with Augmented Reality in a Digital Marketing Classroom

Elevating Students’ Shared Learning Experiences with Augmented Reality in a Digital Marketing Classroom

Developing a city-specific walkability index through a participatory approach

Abstract. The extent to which the built environment encourages people to walk in public spaces, hence the quality of being walkable or ‘walkability’ has long been associated with positive outcomes on people’s health. While various studies have developed indices to assess walkability, limited attention has been given to indices that reflect the influence of specific city characteristics on walkability. This study showcases the development of a city-specific walkability index through a participatory approach using Amsterdam as a case study. It explores the viewpoints of urban designers and policy-makers who work or reside in Amsterdam on what constitutes a walkable street and identifies the most significant walkability factors for Amsterdam. These factors are then quantified based on open-access datasets and integrated into a street-level weighted walkability index. The resulting walkability index underscores the importance of factors such as traffic and crime safety, quality of the pedestrian infrastructure, and proximity to public amenities in shaping residents’ decisions to walk in specific public spaces. Finally, this research underscores the importance of involving individuals through participatory methods, considering subjective perspectives, and acknowledging shared experiences within particular groups and spaces when assessing walkability.

Equality in Programming for Girls and Boys: Adolescents' Shared Experiences from an After-school Support Program in Urban Nairobi

There has been marked progress in access to education, representation of women in leadership, sexual reproductive health, and gender-based violence as a result of gender equality initiatives. However, there is still a strong focus on interventions targeting girls only. Through the adolescents’ lens, this study sought to establish if there is a preference for interventions targeting girls compared to boys in two urban informal settlements; and what benefits were realized from programming for both adolescent boys and girls enrolled in an after-school support program. We employed a thematic analysis approach to answer the research questions. Results showed that most interventions at the community and school levels tended to favor girls over boys despite both facing similar challenges. Some of the benefits of programming for both sexes included sharing academic knowledge; boys gaining knowledge and skills to enable them to be future champions of change; enhanced ability for the adolescents to keep away from social ills; better gains for the society; breaking the gender inequality cycle; and enhanced social-emotional skills. Evidence from this paper highlights that there is a need for program and policy stakeholders to consider gender-transformative approaches and interventions targeting both sexes to maximize gains in education, health, and well-being.

‘Baby Ban’ and ‘we are not the same’: creative non-fiction dialogue exploring pregnancy and motherhood for a funded Paralympic and unfunded Olympic athlete

ABSTRACT Elite athlete mothers are an under researched population. This is remiss given their increasing prevalence, sporting successes, and importance as role models that challenge dominant and traditional views of pregnancy and women in sport. Indeed, sporting organisations are gradually adopting policies to support elite athlete mothers. That said, elite sport is part of a complex social and economic environment that is likely to shape support available to elite athlete mothers. Accordingly, the purpose of this study was to explore the shared and different experiences of elite athlete mothers in and out of UK national funding programmes. Longitudinal semi-structured individual interviews with two elite athlete mothers, one Paralympian receiving funding and one Olympian not in receipt of funding, were conducted. Bengtsson’s 4-stage process was adopted to analyse data through the bioecological model. Data were merged and reorganised into two creative non-fiction dialogues; ‘Baby Ban’ and ‘We are not the same’. These reveal that national funding bodies’ pregnancy and motherhood guidelines, and funding policy were found to conflict, causing confusion and unsupportive experiences. Inconsistencies appeared in the exosystem guidelines and policy, and resulted in differences in communication, pressure, and support that prompted more positive interpersonal experiences for funded athletes than unfunded. Effective communication appeared as crucial for understanding athletes’ needs and to foster a supportive environment, irrespective of funding status. This study was the first to apply a creative non-fiction approach and a bioecological lens to elite athlete mothers’ postpartum experiences and explore the inequalities between those who are funded and unfunded.

Colorectal cancer screening participation in First Nations populations worldwide: a systematic review and data synthesis

First Nations populations have poorer colorectal cancer (CRC) survival compared to non-First Nations populations. Whilst First Nations populations across the world are distinct, shared experiences of discrimination and oppression contribute to persistent health inequities. CRC screening improves survival, however screening rates in First Nations populations are poorly described. This study seeks to define participation rates in CRC screening in First Nations populations worldwide. A systematic literature search was conducted of PubMed, Embase, Cochrane Library, CINAHL, MEDLINE, grey literature, national registries and ClinicalTrials.gov. All sources were searched from their inception date to 18 February 2024. Studies were included if they reported CRC screening rates in adult (≥18 years) First Nations populations. We aimed to undertake a meta-analysis if there were sufficient data. Quality of papers were assessed using the Joanna Briggs Institute (JBI) appraisal tool. The study was registered with PROSPERO, CRD42020210181. The literature search identified 1723 potentially eligible published studies. After review, 57 studies were included, 50 from the United States (US), with the remaining studies from Australia, Aotearoa New Zealand (NZ), Canada, Dominica and Guatemala. Additionally, eleven non-indexed reports from national programs in Australia and NZ were included. There were insufficient data to undertake meta-analysis, therefore a systematic review and narrative synthesis were conducted. CRC screening definitions varied, and included stool-based screening, sigmoidoscopy and colonoscopy. US First Nations screening rates ranged between 4.0 and 79.2%, Australia reported 10.6-35.2%, NZ 18.4-49%, Canada 22.4-53.4%, Guatemala 2.2% and Dominica 4.2%. Fifty-five studies were assessed as moderate or high quality and two as low quality. Our findings suggested that there is wide variation in CRC screening participation rates across First Nations populations. Screening data are lacking in direct comparator groups and longitudinal outcomes. Disaggregation of screening data are required to better understand and address First Nations CRC outcome inequities. None.

A shared experience between services

A shared experience between services

Pressure Injury Prevention in Adult Critically Ill Patients: A Best Practice Implementation Project.

Implementation science is the process of integrating an intervention into practice within an organization or health system and is a useful strategy to improve practice, affect patient outcomes, and promote practice sustainability. In this series, AJN and the journal JBI Evidence Implementation have partnered to deliver examples of how health care facilities from around the world have worked to solve common patient care problems. Through this partnership, we strive to create awareness and share knowledge and experiences by publishing summaries of studies that have appeared in JBI Evidence Implementation. These summaries are designed to provide nursing teams with an overview of the barriers faced and the strategies and resources needed to improve practice and drive change at the unit level. Our goal is to ensure that AJN readers have access to important evidence-based information designed to influence patient outcomes and nursing practice.-Carl A. Kirton, DNP, MBA, RN, ANP, FAAN.

SENSE-ational schools: physical literacy enriched opportunities for students with neurodiversity

ABSTRACT Purpose Given the various social, physical, and environmental factors at play during a physical education (PE) class, some components of the PE experience can be overstimulating for individuals with neurodiversity. There have been repeated calls to action for the creation of inclusive experiences for all children in schools, however, very few have examined inclusive movement experiences across various movement contexts in schools (e.g. PE, recess, hallways, before/after school, etc.). This study reports on the SENSE-ational schools program as a model of an inclusive pedagogical approach for students with neurodiversity across school movement contexts. Data collection/analysis An exploratory case study design was used to examine inclusive practices within 4 elementary schools (grades K-5). Observations were grouped into four thematic categories: (1) School staff communication and engagement; (2) ‘Soft landings’; (3) Pre-teaching and reflective practice; (4) Lesson plans and equipment as a tool to support pedagogy. Findings Consistent with a physical literacy enriched pedagogy approach, the SENSE-ational schools program provided an opportunity for individualized movement journeys regardless of student level of ability or interest. The multiple success pathways for each individual student, afforded by different equipment deployed and strategies implemented, allowed for all students to feel successful in shared movement experiences. The SENSE-ational schools program is illustrated as a ‘best practice’ exemplar of inclusion for students with neurodiversity.

Writing the Unspeakable: Trauma, Memory, and Resistance in Iraqi War Literature

The paper delves into the profound realm of Iraqi war literature, unraveling its multifaceted dimensions. From capturing the visceral traumas induced by conflict to echoing the resonances of resistance, this literature stands as a testament to the Iraqi people's resilience and defiance. Situating the narrative within historical and sociopolitical contexts, the study underscores the universality of trauma and the tenacity of the human spirit. Drawing parallels with global war literature, it highlights shared human experiences across cultures and histories. The paper also examines the redemptive power of literature, emphasizing its role in healing and peacebuilding, while illuminating the unique and diverse voices that constitute the Iraqi war narrative. As Iraq looks towards a future of reconciliation and hope, its literature not only serves as a historical record but also as a beacon, illuminating paths of empathy, understanding, and peace.