Education Advocacy Research Articles

Refracting the concept of physician advocacy using the prism of professional resistance

Background Advocacy is a well-established term in the context of medicine and medical education. However, what constitutes advocacy is unclear and at times contested as it can range from relatively anodyne acts of facilitating patient journeys to more substantial acts of non-compliance. As a result, guiding medical learners in establishing advocacy as part of their future practice is a somewhat subjective and variant undertaking. Analyzing advocacy using the emerging concept of professional resistance as an analytic prism can afford better understanding of what advocacy means in a health professions context. Methods The authors employed a concept analysis methodology to explore discourses of advocacy using the concept of ‘resistance’ as a prism. The findings of the study are presented as a series of dyadic tensions that elicit different meanings of advocacy, including the rhetorical uses of the term ‘advocacy’ and ‘resistance’. Results Physician advocacy can be defined in terms of six dyads: scope and scale, goals and intentions, effort and risk, disobedience and confrontation, responsibility and commitment, and consequences and outcomes. Moreover, describing acts or positions as ‘advocacy’ confers legitimacy and authority, whereas describing acts or positions as ‘resistance’ confers doubt as to their ethical and professional credibility even when they refer to the same things. Conclusions By utilizing resistance as an analytic prism to deconstruct advocacy in health professions education, the authors seek to resolve some of the tensions and areas of uncertainty associated with the use of the term ‘advocacy’ in medical education, and to advance new ways of thinking about these two concepts. This is achieved through developing an understanding of advocacy and resistance, not as discrete categories, but as discursive positions, such that there are factors common to both that need to be interrogated to properly understand the advocacy-resistance landscape in medical education.

E-Cigarette and Vaping Perspectives: Recommendations for Occupational Health Nurses.

Statistics from the Centers for Disease Control indicate that the use of e-cigarettes, vaping, and other electronic nicotine delivery systems (ENDS) are increasing although data on their safety is limited. While most employers ban smoking in the workplace, tobacco-free policies do not always extend specifically to e-cigarette products. An IRB approved exploratory, cross-sectional study was conducted to investigate occupational health professionals' (OHPs) knowledge of e-cigarettes, vaping and ENDS and the ability to create change in tobacco-free workplace policies. A 91-item electronic survey was sent via email to 3248 OHPs who were members of the American Association of Occupational Health Nurses. A total of 299 surveys were returned, but only 230 completed the entire survey. Of those who completed the entire survey, those with advanced education had higher attitude toward change summary scores (p = .043) and those with lower years of practicing had low scores for transformational leadership (p = .039). Approximately 40% of individuals did not have or were unsure that a tobacco-free program was in place that included e-cigarettes, but the majority (90%) perceived their organizational leaders as interested in safety changes. The majority of respondents understood the health issues inherent in e-cigarettes, were open to implementing policies that included e-cigarettes but needed education and both managerial and employee support to implement policy changes. OHPs are well positioned to be advocates for workplace education, policy development, and worker health promotion for smoking and vaping cessation by leading organizational change.

Measuring what really matters: Advocacy-led co-creation and accrual of a pan-cancer QoL survey.

240 Background: Implementing co-creation methods in research may provide vital input to improve accrual, retention, and research value. Advocates for Collaborative Education (ACE), a global coalition of patient, community, research, and policy advocates, used co-creation methodology with patients, survivors, and metavivors to Design, Develop , and Deploy a survey to define and quantify QoL impacts across a large sample of individuals with a diagnosis or history of cancer. Methods: With a defined primary objective to “gain insight into challenges faced by individuals with a history or diagnosis of cancer and how these challenges impact their life and quality of life,” a co-creation team of individuals with lived experience in early stage or metastatic cancers was established. In the Design phase, co-creation team members were interviewed and engaged in discussions on side effect measurement and impact. They were asked a variety of questions, including what side effects they believed were most impactful to QoL, what elements they felt were missing in conversations around QoL, and how accurately they felt QoL was measured in the clinical setting. In the Develop phase, survey questions were developed and vetted with the co-creation team. In the Deploy phase, co-creation team members, advocate members of the ACE community, and aligned advocacy groups, were key to recruiting a broad audience via electronic distribution and social media platforms. Results: Efforts resulted in the co-creation of a six-section, 93 question, IRB-exempt survey. The co-creation team identified 17 treatment-related side effects that were incorporated into the survey. Survey questions asked respondents about perceived severity of side effects, how well informed they felt about possibilities of experiencing these side effects, access to supportive care, side effects of supportive care therapies, and personal preferences for receiving cancer-related information. A unique measurement scale was shaped by the co-creation team to be more reflective of side effect impact on QoL. In five weeks, the survey accrued over 500 responses across a variety of cancer types (15+), stages (0 - IV), ages, statuses, and racial groups. Conclusions: Co-creation methods were used in Design to identify side effect experiences in cancer treatment and validate what matters most to individuals with cancer; in Develop to validate a pan-cancer survey examining what mattered to the audience of interest; and in Deploy to rapidly accrue a large and diverse set of responses through advocacy partnerships. Co-creation also identified layers of side effect management challenges that cannot be reflected in current rubrics for QoL measurement. While co-creation may seem daunting, this study provides a template for effective, quality partnerships between study teams, advocates, and advocacy groups for implementing co-creation methods in the cancer setting.

Conceptualization and teaching health advocacy in undergraduate medical education:a document analysis.

Health advocacy is considered to be a core competence for physicians, but it remains unclear how the health advocacy role, despite being described in overarching competency frameworks, is operationalized in undergraduate medical education (UME). This study aimed to identify how health advocacy is conceptualized and taught in undergraduate medical curricula. We performed a qualitative analysis of curriculum documents from all eight medical schools in the Netherlands, all of which offered competency-based UME. Thematic analysis was used to code all the documents and generate themes on health advocacy conceptualization and teaching. To categorize the emerging themes, we used the framework of Van Melle et al. for evaluating the implementation of competency-based medical educational programs. Health advocacy was mostly conceptualized in mission statements about social responsibility of future physicians, related to prevention and promoting health. We found key concepts of health advocacy to be taught mainly in public health and social medicine courses in the bachelor stage and in community-based clerkships in the master stage. Specific knowledge, skills and attitudes related to health advocacy were taught mostly in distinct longitudinal learning pathways in three curricula. Health advocacy is conceptualized mostly as related to social responsibility for future physicians. Its teaching is mostly embedded in public health and social medicine courses and community-based settings. A wider implementation is warranted, extending its teaching to the full width of medical teaching, with longitudinal learning pathways providing a promising route for more integrative health advocacy teaching.

Advocates for STEM education: Developing advocacy identity in STEM teacher leadership

AbstractScience, technology, engineering, and mathematics (STEM) teacher advocacy is a particular skillset within STEM teacher leadership, but little is known about how STEM teacher leaders develop their identity as advocates for STEM education. To glean a more nuanced and deeper understanding of developing advocate identity among STEM teacher leaders, we conducted a duoethnographic study to critically reflect on our lived experiences as STEM teacher leaders engaged in advocacy. Drawing upon identity theory to frame our study, we co‐developed and individually responded to a set of questions and prompts that critically interrogated our experiences, leading toward identifying as advocates for STEM education. Multiple subsequent critical discussions about our responses led to a recorded dialogic conversation, which acted as our site of research. Emergent themes from duoethnographic analysis revealed having increased awareness of STEM education policies and their impacts, recognizing injustices affecting marginalized communities, and acknowledging systemic barriers preventing community voices in policymaking helped to strengthen our advocacy identities. The dialogue also emphasized the importance of reaching out to communities to understand needs when developing policy recommendations. We conclude the study by making recommendations to support STEM teacher leaders interested in engaging in advocacy at the individual classroom, school, and district levels.

Fostering Critical Thinking Skills: Comparative Creative Projects in General Education Humanities and Social Science Classrooms

According to both post-secondary educational advocates and employers, critical thinking is a vital skill for students to learn during their university education. It is not a skill, however, that students can be introduced to once and then expected to independently apply. Instead, critical thinking skills should be integrated and practiced throughout a student’s degree program. Including project-based learning (PjBL) in general education classes can serve a dual purpose for the general education instructor: first, well-designed project-based assignments allow students to practice many of the cognitive and metacognitive skills associated with critical thinking, and, second, they enable students to connect the material in the general education classroom to their own experiences, making it a more robust learning opportunity while at the same time providing students choice. This essay reflects on the PjBL assignment “Thinking Outside the Essay” to illustrate one potential avenue for humanities and social and behavioral science faculty to facilitate practice in critical thinking, provide student choice, and connect course content to students’ lived experiences.

Policy Solutions: Pandemic recovery will depend on political rediscovery

The current culture wars have been showing up in schools and districts, making local school board races increasingly partisan. The 2024 presidential race is placing even more attention on the partisan divide in local education policies and decisions. Columnist Jonathan E. Collins writes that education advocates can leverage this focus and help put aside partisan politics and meet the post-pandemic challenges students face.

Using Relational Feminism as an Approach to Practice in Working with Families in Special Education

Families of children with disabilities have unique relational needs that may be addressed by practitioners in the field of family science. In this article, we discuss how relational feminism was used as an approach to working with families in a rural Special Education program to facilitate success for very young students with neurodevelopmental disorders and non-specified disabilities. This article provides a brief history of families’ roles in Special Education advocacy, along with the tenets of relational feminism. We discuss ways that relational feminism was used to create connections within the professional community, and with marginalized families. We also discuss the strengths and limitations of using relational feminism to promote connection and voice for families of marginalized and vulnerable individuals in the public education context.

Plugging into power: Family and community engagement to help dismantle inequalities in computer science (CS) education

Research demonstrates a connection between parent perspectives and children’s decisions to pursue careers in STEM (e.g. Albritton et al., 2020; Fouad et al., 2016). However, there is limited research on parents’ impact on CS education advocacy. Through one-on-one parent interviews, this study found that parents engage in educational advocacy, but have limited access to CS resources and information on how to advocate for computing education. Regardless, parents recognize their children need to learn computing and want access to CS. This research illustrates the importance of leveraging parents’ advocacy to ensure meaningful CS education for all.

Women's Education and Social Transformation in the Ottoman Press: The Example of the Second Constitutional Era

This study explores the discourse on women's education and social transformation in the Ottoman press during the Second Constitutional Period, focusing on how women's roles were conceptualized and debated in the context of national modernization efforts. Utilizing qualitative content analysis of periodicals from 1908 to 1918, the research examines the narratives presented in women's magazines and broader journalistic outputs that addressed the themes of education, social participation, and gender norms. The findings highlight the press's dual role as both a reflector and a shaper of public opinion and policy concerning women's roles in society. Notably, the period saw an increased advocacy for women's rights, education, and participation in the public sphere, reflecting a significant shift towards feminist ideologies within the Ottoman intellectual community. The study concludes that the Second Constitutional Period was crucial in redefining women's societal roles, with the press playing a key role in promoting educational reforms and advocating for gender equality. This period set the stage for future advancements in women's rights in Turkey, making it a foundational era for the subsequent feminist movements in the Turkish Republic. Keywords: Ottoman Empire, Second Constitutional Period, women's education, social transformation, feminist movements, Ottoman press

Determinants of Fertility in Arid Regions of Kenya: A Case of Westpokot County

The world's population has continued to increase and is expected to reach 10.8 billion by 2025. Population growth has negative consequences, including unemployment, food insecurity, and poor quality of life. The Kenyan government has implemented programs over the years aimed at reducing fertility, leading to a reduction in total fertility from 8.2 in the 1970s to 3.9 in 2014. However, counties in the arid and semi-arid regions of Kenya have recorded instances of a rise in fertility, derailing the government's efforts to reduce population and improve quality of life. This study, therefore, investigated the determinants of fertility in West Pokot County and the sociodemographic drivers of fertility. The study used a Poisson regression to analyze the estimates and found that a woman's education had a significant impact on the fertility rate in West Pokot. Women with secondary and tertiary education were more likely to have fewer children than women with no formal education. These findings corroborate previous studies, such as those by Kwame (2002) [35] and Longwe et al. (2012) [37], which also observed that women with higher levels of education tend to have fewer children. The study's recommendations emphasize the continued advocacy for girl-child education as a means of reducing the fertility rate in Kenya. Investing in girls' education, particularly at the secondary and tertiary levels, can empower women, delay marriage and childbearing, and ultimately contribute to the government's efforts to manage population growth and improve the quality of life for its citizens. By addressing the educational disparities and promoting access to higher education for women in the arid and semi-arid regions of Kenya, policymakers can leverage this key determinant of fertility to achieve more sustainable population dynamics and development outcomes.

Legal Culture and Disability Rights in Indonesian Islamic Higher Education: A Review of Practices

This research aims to examine disability rights in relation to Islamic universities in Indonesia, paying attention to the legal culture concerning equal opportunities for disabled people. As a qualitative study with an empirical legal research method, this research will therefore gather information from various sources to examine current practices concerning regulations, facilities, and academic and social support, and disability education in Islamic higher learning institutions. The findings indicate that there is a major disparity between the legislation and the realities on the field. Implementation of strategies is poor, and a number of strategies are even ineffectual. Lack of physical infrastructure, academic accommodations, and training on the disability topics are some of the main challenges regarding full inclusion. Based on the study findings, it is suggested to enhance and expand the existing policies that include all parties and policies based on Islamic values that support equality and social justice. The final section reiterates the call for the reform of institutional culture and the advocacy of continuous public education to achieve cultural change.

Creating a Responsive Society for Effective Implementation of Inclusive Education: The Case for the Adoption of the Socioecological Model

Inclusive education increases human capital such as knowledge, skills, social interactions, and health, which enhance individuals’ chances for higher earnings, social mobility, and sustainable growth within communities and countries. For inclusive education to be successful, a written plan or an individualized education plan has been advocated for. The concept of this plan defines special education programs, accommodations, and services that a school board will provide for students or the practice of helping students meet their educational goals through educational programs that modify certain course requirements to be either above or below age-appropriate, grade-level expectations, and the provision of alternative course or class expectations that help students acquire knowledge and skills that are not part of the curriculum. Therefore, using this plan, the proponents of inclusive education advocate for the inclusion of individuals living with physical and mental impairments, such as sensory or mobility limitations, intellectual disabilities, language disorders, and behavior disorders, to promote education access to marginalized groups in society. On the other hand, the opponents of inclusion education argue that the concept of a written plan, or an individualized education plan, seems ineffective and paradoxical to the general government’s policy on an inclusive classroom. A review of existing literature on inclusive education shows that the inconsistencies in both the concept and implementation of inclusive education are the outcomes of the dichotomy between an unresponsive society, which encourages a stagnant or ill-prepared system, and a rapidly evolving political correctness environment. As a way forward, we recommend the adoption of a social-ecological model for creating a responsive society for the effective development and implementation of inclusive education policies based on the findings of our consolidated literature review. Received: 19 May 2024 / Accepted: 27 June 2024 / Published: 8 July 2024

Professor M.Ya. Kittary and Technical Education in the Russian Empire

Throughout its history, Kazan University has always been proud of its distinguished alumni and esteemed professors. Among them, Modest Yakovlevich Kittary, a professor at Kazan Imperial University and the head of the Department of Technology from 1850 to 1857, stands out as a strong advocate for technical education. He was one of the few who embraced and supported the state’s vision for universities as centers of academic, pedagogical, educational, and cultural progress within the province, region, and the entire nation. As a passionate civic and public activist, he championed the importance of technical education for industrialists and the general public, recognizing its potential to elevate the level of culture, literacy, and prosperity. His work prompted the revival of the Kazan Economic Society, the opening of new factories, as well as technical and technological advances. M.Ya. Kittary’s life has been the research focus of many Kazan University scholars. Here, his contribution to promoting technical education is analyzed in greater detail based on the materials from the Journal of the Ministry of National Education. Particular attention is paid to the changes in the educational system of the Russian Empire during that period, as documented by the above journal, and the central role of M.Ya. Kittary in the modernization of the higher technical education landscape.

Hyperedu online learning program for hyperspectral remote sensing: Concept, implementation and lessons learned

The increasing importance of Earth observation information for society and environment, particularly in the expanding domain of hyperspectral remote sensing, along with the significantly increasing data availability, emphasizes the demand for online education to address the growing need for expertise in this domain. We present a comprehensive review of existing online education programs on Earth observation that underline the limited availability of online resources for hyperspectral remote sensing.To respond to this demand, we introduce HYPERedu, an online education program on hyperspectral remote sensing that has been developed as part of the EnMAP satellite mission since 2019. The program’s core components, content, and participation statistics, along with insights from participant feedback, are presented. HYPERedu offers a wide range of resources, including slide collections, tutorials, video screencasts, and online courses, making them accessible to a broad audience for university teaching, training schools and individual learning. The program’s effectiveness as well as challenges and insights encountered during program development are discussed. We emphasize the importance of collaborative learning, sustainability efforts for long-term material accessibility and quality assurance, and the need to bridge the digital divide with offline options, open-source tools, and multilingual content. Effective content presentation is vital, focusing on consistent branding, concise modules, interactive features, and narrative-style videos. Additionally, we explore the future of online Earth observation learning, considering enhanced participant interaction and the integration of new learning concepts. Finally, we underscore the significance of outreach and training for satellite mission utilization and advocate for open education to promote open science, data, software, and accessibility for inclusive education.

Finding Freire: When Educational Courses Get Personal

This paper explores Paulo Freire’s philosophy from the perspective of an adult education advocate and student. The author describes being introduced to Freire’s works and provides an analysis of the impact of Freire’s theories in both personal and academic realms. Themes explored include praxis, understanding the oppressor/oppressed dichotomy, and what Freire’s theories look like in use as an adult educator. This paper is a personal perspective of Paulo Freire’s work.

Developing Teachers’ Advocate Identities Through Exploratory Talk

ABSTRACT In educational contexts characterized by persisting inequalities, preparing teachers to advocate for historically marginalized students is a critical element in constructing more equitable educational experiences for all students and their families. However, little is known about how teachers develop and hone their sense of advocacy. Therefore, this study documents how English as a second language (ESL) endorsement candidates (ECs; n = 60) collaboratively develop a sense of “advocacy identity” when they engage in exploratory talk after a simulated advocacy experience. Drawing on group reflection videos, findings highlight how teachers’ lives and experiences inform their interpretations of advocacy. By sharing personal narratives and different types of knowledge, teachers articulate their thinking, solidify their stance as advocates, and co-construct new understandings of what it means to be an advocate for their multilingual learners (MLs). These findings have implications for promoting deeper engagement with advocacy in teacher education and professional development, ultimately toward building collaborative capacity for teachers to support and advocate for historically marginalized students.

NFS-29. DEVELOPMENTAL SCREENING AND MONITORING IN NEUROFIBROMATOSIS-1

Abstract BACKGROUND Pilot data showed developmental screening at Neurofibromatosis-1 (NF1) appointments is feasible to identify those needing neuropsychology or other referrals. Outcomes for this larger sample, many re-screened and/or seen for a neuropsychology visit, allow us to describe evolving clinical management. METHODS Screenings are offered annually (ages 2-17) at NF1 clinic appointments by the psychosocial team. Forty-eight early childhood patients (ages 2-5) were screened (54% male, 66.7% White,) while 35 were ineligible (e.g., recent neuropsychology visit) or experienced logistical barriers to screening. These groups did not differ in race/ethnicity, sex, glioma status, or childhood opportunity index. Parents completed well-validated measures including the PEDS: Developmental Milestones – Assessment Level (PEDS:DM), Modified Checklist for Autism in Toddlers, and/or an ADHD Rating for preschoolers. RESULTS On initial screens, 73.9% showed a delay of 25% or more on at least one PEDS:DM domain. Measures often aligned with clinical impressions (81.3%); however, when findings were contextualized with record review, there were false positives (8.3%) and negatives (10.4%). Screening identified emerging concerns in attention, fine-motor, and academic skills. Nearly half (47.9%) of patients had services at the time of screening, and new/modified recommendations were offered for 70.8%. One third were referred to our Education Coordinator or Social Worker for educational advocacy, support through Early Intervention/school evaluation, or outpatient referrals. Twenty-two (45.8%) were referred to Neuropsychology and 18 have now been seen (consultation, targeted testing, or comprehensive evaluation) to confirm or rule-out neurodevelopmental diagnoses (e.g., autism, ADHD, language or global delay) and further guide educational or intervention management. Follow-up screens (N = 21) have monitored developmental progress, previously subclinical symptoms rising to a significant level, and need for re-evaluation or additional services. CONCLUSIONS Multipronged systematic screening results in referrals for diagnostic clarity, guides transition from Early Intervention to school services, and supports dynamic management of changing concerns.

Unveiling impacts: A quality of life survey for individuals with a history or diagnosis of cancer.

e23179 Background: Cancer treatments, despite increasing effectiveness, involve significant short and long-term side effects profoundly impacting a person's quality of life (QoL). In response, Advocates for Collaborative Education, a global coalition of patient advocates, initiated an exempt, online survey to gather insights on the perceived QoL impact of cancer diagnosis and treatment. The effort sought to identify community priorities and hopes to guide improvements in supportive care. Methods: A comprehensive survey, developed by patients, survivors, and advocates, comprised six sections and 93 questions. Co-creation played a vital role in determining relevant categories, questions, and measurement scales to assess severity and impact of QoL challenges. The study requested demographic and cancer diagnosis data before inquiring about 17 treatment-related side effects, their perceived severity, preparation, unintended side effects of supportive care, and personal preferences for cancer-related information. Recruitment was conducted via social media. Results: The survey garnered responses from 515 individuals with a history of cancer and a wide range of demographic subsets, including age, race, stage of cancer, and treatment modalities. Survey respondents reported an average pre-diagnosis QoL score of 8.87 out of 10, which declined to a mean score of 6.41 post-diagnosis. Across all cancer types, physical well-being was a top priority for most respondents (51.5%), followed by emotional well-being (25.4%). Across a variety of side effects, unintended consequences of side effect treatments were highlighted, revealing complexities in supportive care. Detailed results for all categories and stratification by subsets of age, race, metastatic vs. early stage, treatment type, and others are available for presentation and publication purposes. Conclusions: This study highlights the significant negative impact of cancer treatment on an individual's QoL, addressing an underexplored area of cancer research. While managing treatment side effects is crucial, supportive therapies may introduce additional side effects, exacerbating an overall burden on patients. The collaborative survey development with patients and survivors represents a pivotal step, offering valuable insights for enhancing the well-being of individuals affected by cancer. [Table: see text]

Patient reported outcomes among U.S. Veterans living with myeloproliferative neoplasms.

e18528 Background: Myeloproliferative Neoplasms (MPNs) profoundly affect patients' well-being, necessitating effective symptom relief. Patient-reported outcomes are pivotal for care improvement, aligning with Centers for Medicare and Medicaid Services priorities. This study aims to assess MPN symptom burden among U.S. Veterans, examining risk levels, thrombo-hemorrhagic complications, medication use, information access, care, and service-connected benefits. Methods: Conducted as a cross-sectional survey from December 1, 2023, - January 22, 2024, all Veterans in the MPN Advocacy Education & International database were recruited. Symptom burden was assessed using the validated MPN Symptom Assessment Form Total Symptom Score (MPN SAF TSS), with descriptive statistics and T-tests employed for analysis. Results: Of 61 respondents, 88% were male, 92% Caucasian, 88% served during the Vietnam war. The mean age was 73±7, with MPN diagnosis at 64±9 and a mean duration of 44±10 years from service-connected exposure. Key findings included 56% Polycythemia Vera, 26% Essential Thrombocythemia, 16% Primary Myelofibrosis, 70% JAK2, 10% CALR, 3% MPL, 14% unaware of their mutation status, and 34% unaware of MPN risk status. Seventeen (28%) underwent phlebotomy, 64% used Hydroxyurea, 29% Ruxolitinib, and 3% Interferon. Fatigue and itching were the predominant and severe symptoms (Table), with 43% reporting no symptom improvement. Mean MPN SAF TSS of all respondents was higher than prior study by Emanuel et.al. which adjusted for MPN subtype (36.4 vs. 21.6, p<0.0001). Twelve (20%) reported bleeding and 10% reported venous thrombosis after MPN diagnosis, while 13% reported arterial thrombosis before MPN diagnosis. Twenty-two (36%) are not seeing an MPN specialist and 61% are not seeing a hematologist at their local Veterans Affairs Medical Centers. Twenty-three (38%) did not seek a second opinion while 43% do not have a caregiver. Respondents turn to MPN organizations (75%), physician offices (74%), Google Search (49%), Webinars (41%), and Facebook (23%) for information. Five (8%) received service-connected disability benefits. Conclusions: Veterans with MPNs endure a substantial symptom burden, surpassing previous studies, signifying suboptimal management. Limited access to care persists, necessitating enhanced support. However, self-reporting bias and potential limitations in activity assessment must be acknowledged. Efforts to enhance MPN awareness, specialized care, and support mechanisms are imperative for comprehensive management. [Table: see text]