Advocacy Groups Research Articles

Gender equality advocacy and socio-economic inclusion: A comparative study of community-based approaches in promoting women’s empowerment and economic resilience (2022)

This review examines community-based approaches to gender equality advocacy and socio-economic inclusion, focusing on strategies to promote women’s empowerment and economic resilience. As global discourse on gender equality gains momentum, community-driven initiatives have emerged as pivotal agents of change, particularly in marginalized communities where structural, cultural, and socio-economic barriers persist. This provides a comparative analysis of grassroots movements, local advocacy groups, and capacity-building programs that seek to enhance women’s roles in economic and social domains. Through a qualitative approach, including case studies from various regions, this study explores how community-based strategies such as microfinance initiatives, vocational training, and entrepreneurial support networks have been instrumental in improving financial independence and workforce participation for women. Findings indicate that localized initiatives have achieved notable success in challenging traditional gender roles, expanding women’s access to resources, and fostering economic resilience. Financial inclusion mechanisms, such as savings groups and access to credit, emerged as critical factors in enhancing women’s economic stability, particularly in settings where formal financial systems are inaccessible. Additionally, the study highlights the impact of social empowerment initiatives that focus on health, education, and altering perceptions of gender roles, thereby creating a supportive environment for sustainable change. Challenges remain, particularly regarding the sustainability and scalability of community-based models, as well as cultural resistance to gender equality. The review concludes with policy recommendations to strengthen partnerships between governments, private sectors, and community organizations, promote adaptable models for broader implementation, and improve monitoring frameworks. This comparative analysis underscores the significance of community-based approaches in advancing gender equality, advocating for their expanded role in global efforts toward socio-economic inclusion and resilience for women.

Efficacy and Action: How Targeted Messages Influence Support of Social Advocacy Organizations

Scholars widely agree that to mobilize individuals to action, it is vital that interest groups persuade them of the efficacy of participation. Despite firmly establishing the relationship between efficacy and action, research tells us surprisingly little about what kind of messaging most effectively evokes feelings of efficacy. To address this gap in the literature, we conduct a pair of survey experiments, each with three manipulations. The experiments present messages by fictitious advocacy organizations that emphasize the individual (action by an individual can produce change), the identity group (action by a specific identity group can produce change), or the organization (action by our organization can political change). Each message is designed to increase self-efficacy, group efficacy, or organizational efficacy, respectively. We conduct a two-stage analysis to determine first whether each message is able to increase efficacy, and then whether those feelings translate to behavioral support of the campaign. We find that while motivational messages often increase the intent to support a campaign, they only induce behavioral change in limited contexts.

Cross border solidarity in journalist protection and the American paradox

United States governments (including those of states) have a paradoxical record in facilitating press protection. The US, with its middle-eastern allies, imprisoned and killed more media workers than any other nation from 1999 to 2007 but there were few effective collaborative responses from the news industry and considerable media commentary undermining efforts toward accountability. Since then, the encouragement of violence against media, and high profile confinements of journalists, have been domesticated, bringing the struggle for media freedom home to US media as never before. But the US has simultaneously invested heavily in media protection and speech rights outside its borders, and is home to globally prominent press defenders. This chapter examines how an internal industry discourse of ‘worthy’ and ‘unworthy’ reporters and the politicization of news production has derailed cross-border solidarity and collaboration among journalists and advocacy groups in the context of this ‘American paradox’.

Narrative Disruption: Evolving Narcofeminism Storyshare

Narcofeminism Storyshare is an iterative storyshare model developed by NC Survivors Union, a harm reduction and advocacy organization led by directly impacted people, that uses autobiographical story development by women and gender diverse people who use drugs to disrupt stigmatizing societal narratives, achieve healing for individuals and communities, and spark organizing and structural change. We describe the theoretical frameworks behind Narcofeminism Storyshare, including the international movement of narcofeminism, narrative theory, and stigma reduction theory. We detail the components of the Narcofeminism Storyshare process–structural analysis conversations, group editing, one-on-one peer editing, grounding our stories in the evidence base, completing various types of story exercises that Narcofeminism Storyshare has developed, the creation of trauma-informed spaces, and the utilization of the stories in advocacy and trainings for health and social service professionals. Finally, we conclude by describing lessons learned while developing the model that may be useful for other organizations working in this capacity as well as by outlining the model's unique contribution to the field.

“It was Nothing That was Super Subversive”: Resistance as a Narrative Process in Dialectical Identity Spaces Among Mothers of LGBTQ+ Children in the Church of Jesus Christ of Latter-day Saints

ABSTRACT This study examines resistance and identity dialectics among mothers of LGBTQ+ children in the Church of Jesus Christ of Latter-day Saints. Narrative theme analysis of in-depth interviews with 22 members of Mama Dragons, a nonprofit advocacy organization, revealed voiced identities (Mother, Latter-day Saint, LGBTQ+ Mother, and Dragon/Advocate) conceptualized as existing on a coordinate plane that measures voice (individual or organizational), and ways of knowing (ontological or experiential). Findings advance a view of dialectical resistance that moves beyond current understandings of an alternating control-resistance dialectic, suggesting that the process of resisting happens between storied identities. This study extends the exploration of resistance beyond organizational boundaries, suggesting that where totalistic organizational values bleed into the core identity (e.g. faith values), resistance is undertaken against not only the organization but often formerly held antenarrative versions of the self.

Global Policy and Advocacy Initiatives for Improving Kidney Care: Report from the 2023 ISN-GKHA Study.

National strategies to address chronic kidney disease (CKD) are crucial to support kidney health. Lack of political support in the form of policy decisions and funding leads to fragmentation of kidney care and catastrophic health expenditure. This study used data from the third iteration of the International Society of Nephrology Global Kidney Health Atlas (ISN-GKHA) to obtain a global overview of the existence and reach of national strategies for kidney care. We leveraged data from an international survey of stakeholders (clinicians, policymakers, and patient advocates) conducted by the ISN between July and September 2022. Data were extracted on existence and scope of national non-communicable disease (NCD) and/or CKD-specific strategies and policies, as well as recognition of kidney disease as a national health priority through participant perception and existence of CKD advocacy groups. Overall, stakeholders from 167 countries responded to the survey representing 97.4% of the global population. National strategies for NCDs were reported by 56% of countries. In 29% of countries CKD was addressed within an NCD strategy while 25% of countries reported CKD-specific strategies. Countries with CKD-specific strategies were more likely to address all CKD populations (non-dialysis dependent CKD, chronic dialysis and kidney transplantation) compared to those with NCD strategies only (51.2% versus 19%). Of the 54% of countries with any CKD strategy 89% reported public funding of the full spectrum of CKD care compared to 64% of those with no CKD strategy. KF, CKD and AKI were reported to be recognized as national health priorities by 63%, 48% and 19% of countries respectively. The inclusion of CKD and kidney failure within national health strategies is frequently lacking. Countries with CKD-specific policies tend to include a broader spectrum of kidney disease populations and to fund kidney care more than those with CKD policies integrated within NCD strategies. Greater global and national prioritization of kidney health are required to reduce global inequities in access to kidney care.

Relationship of physicians with the pharmaceutical industry in Pakistan: present status, issues, and way forward

This manuscript examines the ethics of the relationship between the pharmaceutical industry and practising physicians. The pharmaceutical industry is alleged to provide incentives to physicians and who in return are expected to prescribe their manufactured medications. Such practices are often considered unethical and against the rules and regulations of the regulatory bodies. The core issue facing physicians and pharmaceutical industry relationships is lack of regulation and accountability.Public education and awareness are lacking, and they are unable to question prescription practices of practicing physicians. Patient advocacy groups do not exist to safeguard the patient’s rights. There is a need to strengthen regulatory control to ensure the physician community and pharmaceutical industry relationship remains ethical. Both the physician community and pharmaceutical industry are important stakeholders in healthcare delivery and the ethical relationship between them will benefit health care services. Further discussion and debate on this important yet extremely sensitive issue is strongly recommended.Keywords: Physicians; Pharmaceutical industry; Ethics; Regulatory body; Monitoring

Effects of Authenticity in Organizational Advocacy for Polarizing Issues

This study focuses on the impact of authenticity in organizational advocacy for polarizing sociopolitical issues. The study examined how individual publics’ perceptions of authenticity influence the quality of the relationship between an organization and the public, as well as the level of support for the organization. The study also compared these effects across different polarizing sociopolitical issues. Through an online survey ( N = 387), findings revealed a positive association between authenticity in organizational advocacy and the quality of an organization’s relationship with individuals, which led to increased support. Furthermore, the multigroup analysis highlighted the heightened importance of authenticity when organizations advocate for more polarizing issues.

Vermont association leader wants to drive behavioral integration

The newly appointed executive director of the Vermont Association for Mental Health & Addiction Recovery (VAMHAR) intends to embark on a mission reflecting the organization's name. Daniel Franklin believes that one of Vermont's oldest advocacy organizations can serve as a catalyst for integrating mental health and addiction service systems that remain largely siloed.

Barriers to Total Joint Arthroplasty: A Comparison of High-Poverty and Low-Poverty Communities.

Our aim was to determine the most significant barriers to total joint arthroplasty (TJA) for people living in high-poverty communities relative to low-poverty communities. We created a 21-question survey based on interviews with underrepresented minority patients with osteoarthritis targeting five barriers to TJA: trust in surgeon, recovery concerns, cost / insurance issues, fear of poor surgical outcomes, and timing considerations. Participants rated the importance of each barrier on a 5-point Likert scale, dichotomized into very / extremely important and not as important. The survey was distributed at New York City clinics and nationally through an arthritis advocacy group. We used geocoding to link addresses to census tracts, defining "high-poverty communities" as those with ≥20% of residents living below the poverty level. Logistic regression models assessed the association between community poverty status and rating barriers as very / extremely important, adjusting for demographic and clinical factors. Of the 702 survey participants, 16.8% were residents of high-poverty communities. After adjustment, participants from high-poverty communities were more likely to rate trust in surgeon (adjusted odds ratio (aOR): 1.87 [1.24, 2.82]) and fear of poor surgical outcome (aOR: 1.68 [1.08, 2.61]) as very / extremely important. People from high-poverty communities identified lack of trust in surgeons and fear of poor surgical outcomes as more significant barriers to TJA compared to people from low-poverty communities.

The European Rare Kidney Disease Reference Network

Rare kidney diseases encompass awide range of congenital, inherited and acquired conditions. Two million Europeans are affected by rare kidney diseases. The European Rare Kidney Disease Reference Network (ERKNet) aims to improve the clinical management of patients with these diseases. ERKNet encompasses 95highly specialized adult and pediatric nephrology units at 72sites in 24European Union (EU) member states, as well as agroup of patient advocates (European Patient Advocacy Group, ePAG). ERKNet centers care for more than 65,000 rare kidney disease patients and pursues avariety of activities. An online consultation service helps improve the management of complex cases. Expert working groups develop clinical practice guidelines for individual groups of rare kidney diseases. In a3-year postgraduate program, junior physicians at ERKNet centers are trained by experts in the diagnosis and treatment of rare kidney diseases through webinars and case-based eLearning modules. Information brochures and online texts on rare kidney diseases for patients, relatives and the general public are produced and disseminated. Clinical research is supported by aEuropean Registry for Rare Kidney Diseases (ERKReg), which provides important information on demographics and disease progression and facilitates the identification of patient cohorts for therapeutic studies. In addition, the registry provides clinical performance statistics of reference centers and allows benchmarking to promote the harmonization and standardization of care for rare kidney disease patients across Europe.

Messy natures: The political aesthetics of nature recovery

Abstract Current aspirations for nature recovery to address biodiversity loss and climate change will involve changing what landscapes look like, which can create challenging aesthetic experiences for members of the public. In this study, we interrogate the role of aesthetics in shaping visions of nature recovery, focussing on the construction and contestation of ‘mess’ and ‘messiness’ in nature recovery. We examine the political aesthetics of messy natures using a qualitative approach investigating visual and text materials across different sites of production in Britain, from newspapers to social media, paying particular attention to visual materials Our results show how the mediated debate around ‘rewilding’ urban environments and a beaver‐themed garden winning a horticultural show are examples of a backlash against untidy environments through a politicised discourse, linking messy nature with left‐wing ideologies, in contrast to the perceived orderliness and conservative ideals of good citizenship associated with tidiness. In contrast, social media imagery of messy and wild gardens demonstrates how mess is consciously framed aesthetically as a desirable ‘look’ for restored nature, symbolising progressive and environmentalist ideals of good citizenship through activities such as nature‐friendly gardening and initiatives such as ‘No Mow May’, which celebrate the aesthetic of a more biodiverse messiness. And finally, we traced how environmental advocacy organisations are prefiguring the future of nature recovery in Britain through commissioned graphical representations that portray a ‘tamed messiness’ and the return of charismatic megafauna. Although these aesthetics may challenge prevailing pastoral aesthetics, they normalise continued inequality in the form of concentrated land ownership, especially in the Scottish Highlands. Policy implications. Our analysis shows that aesthetics play an important role in shaping views of what is ‘natural’, ‘normal’ and ‘good’ and therefore desirable in what a future (recovered) nature looks like. We suggest that nature recovery initiatives take aesthetics seriously, by interrogating how idealisations of ‘how nature should look’ may influence decision‐making alongside ecological and other considerations. Taking aesthetics seriously also opens avenues for engaging with social and environmental justice, where alternative aesthetics can help in imagining more socially and environmentally just futures. Read the free Plain Language Summary for this article on the Journal blog.

QOL-20. NATIONAL BRAIN TUMOR SOCIETY BRAIN TUMOR QUALITY OF LIFE RESEARCH AGENDA

Abstract BACKGROUND QoL is a critical aspect of health care outcomes, particularly in the context of brain tumor treatment and survivorship. There are evidence gaps in optimal strategies for improving QoL among brain tumor patients and care partners. Understanding the multifaceted dimensions of QoL and identifying key areas for brain tumor QoL research can significantly enhance patient care and support. Engaging the brain tumor community in defining QoL outcomes and determining research priorities can help orient research resources to community needs and perspectives. OBJECTIVE To summarize the process and outcomes of an NBTS-led collaborative effort to co-design a comprehensive research agenda on QoL for brain tumor patients and care partners, as outlined in the “Brain Tumor QoL Research Agenda.” METHODS The agenda was developed through a collaborative effort involving experts in neuro-oncology, patients, care partners, patient advocacy groups, and healthcare professionals over a two-year period. A review of existing literature, patient experiences, and expert opinions informed the identification of key research priorities. A multistakeholder advisory group held monthly meetings where brain tumor QoL was defined. In 2023, we conducted two “Research Roundtables” for adults and pediatric/AYA. The World Cafe method captured data and a survey consensus process to validate findings. RESULTS The QoL research agenda delineates a multifaceted framework encompassing domains crucial for understanding and improving QoL in brain tumor patients. Key focus areas include symptom management, psychosocial support, care burden, treatment decision-making, survivorship issues, and health care delivery models. An RFP was released by NBTS with input from stakeholder advisors in April 2024. CONCLUSION The Brain Tumor QoL Research Agenda created a roadmap for advancing research efforts aimed at enhancing the QoL of individuals affected by brain tumors. By addressing the identified research priorities, healthcare stakeholders can work towards implementing effective interventions and policies to optimize patient outcomes and well-being. This program was funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (EACB-23261).

Climate silence: a comparative study of governmental and non-governmental messaging on soil health in Wisconsin, USA

ABSTRACT Soils are the foundation of healthy ecosystems, and promoting soil health is a primary aim of agricultural strategies intended to sequester carbon and combat climate change. In this exploratory study, we conducted a qualitative content analysis to characterize soil health messaging from 10 governmental and 10 non-governmental sources targeting Wisconsin farmers. Data were collected through internet searches, focusing on accessible web content from governmental agencies, public universities, and local offices, as well as prominent industry, nonprofit, and advocacy groups within the agricultural sector. A coding framework, developed through an iterative and inductive approach, identified six primary categories and 37 sub-categories representing key themes in soil health messaging. The study compared messaging across source types by analyzing code term frequency, highlighting differences in content emphasis between governmental and non-governmental sources. Findings indicate that governmental messaging largely advocates for conservation agriculture and associated principles but does not reference climate change nor connections between soil health and broader environmental issues. In contrast, non-governmental messaging offers a wider array of information while drawing connections among soil health, organic agriculture, ecosystem health, and climate change. The omission of climate change by governmental sources may be a significant constraint on soil health discourse and climate action.

Codesign and evaluation of advanced therapeutic information resources for and with families of children with neurological conditions: a mixed methods cross-sectional study

ObjectiveParents and caregivers of children with neurological conditions express interest in new and developing treatments and trials; however, they have limited knowledge of, and access to, reliable information. This study...

Cricket and climate change: an integrative review

The climate crisis is having an increasingly significant impact on sport and cricket, a climate-dependent sport played in some of the most climate-vulnerable regions of the world, is particularly threatened. Conversely, the relationship between cricket and climate change is understudied and the existent knowledge base is widely spread. In response, this paper utilises an integrative review methodology to bring together this disparate knowledge base in order to more effectively understand cricket’s relationship to climate change, with a particular focus on the threat climate change poses to cricket, cricket’s impact on the natural environment, and sustainability initiatives undertaken by cricketing stakeholders. This review revealed that the knowledge base is dominated by environmental advocacy organisations and there is a need for more academic research. Conversely, existing research, especially from outside of cricket, highlights the unequal climate vulnerabilities faced by cricketing stakeholders, as well as a lack of action from these stakeholders.

Gender Differences in Self-Advocacy Among Cancer Survivors: How Women and Men Vary in How They Learn to Engage in Decision-Making and Social Support.

Understanding gender variations in self-advocacy can help oncology clinicians support the educational needs of cancer survivors. This study aims to examine the role of gender along with additional other sociodemographic variables in how cancer survivors self-advocate including their engagement in decision-making, communication with healthcare providers, and use of social support. Data from two cross-sectional descriptive studies were combined for analyses. Each study used convenience sampling methods to recruit adults (≥ 18 years old) with a history of invasive cancer who had English literacy from cancer clinics and community advocacy groups. The first study recruited women (n = 317), and the second study recruited men (n = 179). In both studies, participants completed two assessments of self-advocacy: Self-Advocacy in Cancer Survivorship (SACS) Scale and the Patient Self-Advocacy Scale. We built a linear regression model to test the association between gender and self-advocacy total and subscale scores controlling for covariates. N = 496 participants completed study procedures between 2014 and 2022. On both self-advocacy scales, women reported higher self-advocacy scores compared to men, with women's higher scores on the SACS subscales of connected strength and informed decision-making driving the gender difference in cancer-specific self-advocacy. Self-advocacy behaviors are associated with gender, most notably by way of individuals' ability to derive strength through social connection. Women tend to have greater engagement in care with larger and more meaningful social networks, while men report less engagement. Educational materials for cancer survivors should leverage gender-associated self-advocacy skills and bolster skills that require support.

Perceptual filters: Exploring disability and ableism’s cognitive framework

ABSTRACT Ableism, akin to other forms of discrimination such as sexism and racism, is increasingly recognized as a pervasive societal concern directed towards individuals with disabilities. This scholarly inquiry delineates the operational definition, manifestations, and ramifications of ableism, with a specific focus on its manifestations within healthcare settings. It underscores the critical need for targeted interventions aimed at mitigating biases among healthcare professionals and promoting inclusivity within healthcare delivery systems. Utilizing insights from cognitive psychology, the study conceptualizes ableism as a cognitive distortion, explicating the mechanisms through which biases shape perceptions and recommending Cognitive Behavioral Therapy (CBT) as a promising intervention modality. The paper advocates for exploration of intersectional analyses, utilization of qualitative research methodologies, and cultivation of collaborative partnerships with disability advocacy organizations to develop more comprehensive intervention approaches. Noteworthy limitations of the current discourse include the potential for tokenistic representations and the imperative for genuine and substantive engagement with the voices and experiences of individuals with disabilities.

A descriptive survey of patient experiences and access to specialty medicines with alternative funding programs.

Alternative funding programs (AFPs) seek to reduce health plan sponsor costs, for example by excluding specialty drugs from a beneficiary's plan coverage and requiring patients to obtain medications through alternative sources (typically, the manufacturer's patient assistance programs) via an AFP vendor as a third-party. To describe patients' experiences and specialty medication access with AFPs. A survey method consisting of 26 optional single-choice and multiple-choice questions with branching logic divided across 5 sections (related to patient challenges with AFPs) was administered to patients recruited from an experienced AFP online patient panel and a patient advocacy group. The survey assessed patients' awareness of AFPs from their employers, experience with the patient assistance program application process via the AFP vendor, timeliness of medication access (if granted), and/or the health impact of delay in access. All descriptive and exploratory subgroup analyses were conducted by disease area and reported income levels; statistical analyses were carried out for the exploratory analyses. The final sample included 227 patients. Most patients (61% [136/223]) first heard of the AFP as part of their health benefit when trying to obtain their medication. Of 198 patients, 88% reported being stressed because of the medication coverage denial and the uncertainty of obtaining their medication. More than half of patients (54% [115/213]) reported being uncomfortable with the benefits manager from the AFP vendor. On average, patients reported waiting to receive their medication for 68.2 days (approximately 2 months); 24% (51/215) reported the wait for the medication worsened their condition and 64% (138/215) reported the wait led to stress and/or anxiety. Patients who indicated the wait time negatively affected them had considered a job change or left their job at a 3-5-fold higher rate than those who reported no impact from wait time. A significantly higher proportion of patients with hemophilia and other bleeding disorders reported receiving their prescribed medication less often than patients with other conditions (63% [19/30] vs 81% [52/64]; P = 0.022), whereas more patients with lower incomes (<$50,000 vs >$50,000) reported not receiving any medication (12% [7/57] vs 5% [7/129]; P = 0.657), although these differences were not significant. Most patients who obtain their specialty medicines via AFPs reported being uncomfortable with the process and experiencing treatment delays, which may have been linked to disease progression, worsened mental well-being, and consideration of a job change. Employers should be aware of the potential downstream impacts on employee health, retention, and the employee-employer relationship when considering implementing an AFP into their health plan.

Modifiable factors for somatic symptom persistence in patients with somatic symptom disorder: study protocol for a longitudinal cohort with an embedded ecologically momentary assessment (SOMA.SSD)

IntroductionSomatic symptom disorder (SSD) is a distressing mental disorder characterised by the presence of at least one persistent somatic symptom and a significant psychological burden due to the symptom(s), as well as excessive thoughts, feelings or behaviours related to them or associated health concerns. The primary aim of our study is to deepen the understanding of risk factors and mechanisms for somatic symptom persistence. Specifically, we will investigate the role of patients’ expectations and somatic comorbidity regarding symptom persistence.Methods and analysisIn a prospective 12-month cohort study, n=240 patients with SSD will be recruited from the outpatient clinics of the Department of Psychosomatic Medicine and Psychotherapy at the University Medical Center Hamburg-Eppendorf. The roles of two hypothesised predictors (ie, expectations and comorbidity) will be analysed together with known predisposing and maintaining factors of persistent somatic symptoms. The study entails macrolevel and microlevel assessments to investigate symptom severity over different timespans. Assessments at the macrolevel take place at baseline, 6 and 12 months. At the microlevel, a 10-day ecological momentary assessment study will be implemented to elucidate patients’ dynamic experience with somatic symptoms in their natural environments. In order to elicit possible framing effects on the 10-day course of symptom severity, participants are randomised to either a positive or a negative expectation framing group. Cross-lagged panel models will be used to analyse data at the macrolevel. At the microlevel, multivariate latent growth curve models will be conducted to relate temporal changes in predictor and outcome variables to one another.Ethics and disseminationThe study was approved by the Ethics Committee of the Medical Associations Hamburg, Germany (2020-10197-BO-ff). The results will enable us to draw conclusions regarding the role of expectations for future targeted treatment options and regarding the utility of somatic comorbidity as a potential diagnostic specifier of SSD. Dissemination of our results will be achieved through scientific publications, and lay summaries for study participants, patient advocacy groups and the general public.Trial registration numberISRCTN36251388.