Advocacy Priorities Research Articles

Setting the international research agenda for sarcomas with patients and carers: results of phase II of the Sarcoma Patient Advocacy Global Network (SPAGN) priority setting partnership

BackgroundTypically, researchers and clinicians determine the agenda in sarcoma research. However, patient involvement can have a meaningful impact on research. Therefore, the Patient-Powered Research Network (PPRN) of the Sarcoma Patient Advocacy Global Network (SPAGN) set up a Priority Setting Partnership (PSP). The primary objective of this partnership is to identify priorities for research and patient advocacy topics.MethodsIn the first phase of this PSP, including 264 sarcoma patients and carers from all over the world, 23 research topics regarding sarcomas and 15 patient advocacy topics were identified using an online survey. In the second phase, participants were asked to fill in a top five and a top three of research and patient advocacy topics, respectively. Additionally, sociodemographic characteristics and sarcoma characteristics were collected. Social media channels, local national patient advocacy groups and the SPAGN website were used to distribute the survey.ResultsIn total, 671 patients (75%) and carers (25%) participated in this survey. The five highest ranked research topics were related to causes of sarcoma (43%), prognosis and risk of recurrence (40%), specific subtypes of sarcoma (33%), the role of immunotherapy, targeted therapy and combined therapy (30%), and hereditary aspects (30%). The three highest ranked patient advocacy topics were improving the diagnostic process of sarcoma (39%), access to tumor DNA analysis (37%) and establishing an international sarcoma registry (37%).ConclusionsThis sarcoma PSP has identified priorities for research and patient advocacy, offering guidance for researchers, assisting funding agencies with assessing project relevance and empowering patient advocates to represent the needs of patients and carers.

Advocacy for Equitable Access to Nature and Outdoor Recreation.

Recent research highlights disparities in access to nature and green space, a determinant of mental and physical health. The aim of this report is to describe the process of park auditing as an innovation in nursing education. Teams of baccalaureate nursing students used a practice guideline and park auditing tool to examine the amenities of recreational parks and green space in an urban metroplex in the southern United States. Through data collection and analysis, nursing students captured key indicators of quality and accessibility of 50 urban parks. The findings form the basis for stakeholder recommendations for advocacy to ensure equitable access to green space. Nursing students identified priorities for advocacy to promote park improvements through community-academic-practice partnerships designed to increase outdoor recreation and nature conservation among community members. These experiences reinforced the importance of advocacy with community stakeholders to cocreate strategies for equitable access to nature. [J Nurs Educ. 2024;63(X):XXX-XXX.].

Advocacy in Action: NASN's 2024 Advocacy and Legislative Priorities.

All nurses have a responsibility to advocate. Advocacy is the eighth school nurse standard and can be actualized in many ways. NASN has established advocacy priorities to provide members with strategic advocacy objectives to advance their school nursing practice. One aspect of these priorities is legislative advocacy. The NASN board of directors puts legislative advocacy into action when they visit their Congress members on Capitol Hill. This article describes NASN's advocacy priorities and how school nurse visits to "the Hill" introduces legislative priorities to legislators.

ESSA ADVOCACY NETWORK

INTRODUCTION AND AIMS Advocacy is an important and effective way to influence policy changes to improve outcomes. Best practice advocacy is when efforts are coordinated, multifaceted, structured, and collective. The ESSA Advocacy Network was piloted in 2021, to improve engagement with members, and strengthen ESSA advocacy efforts, whilst simultaneously building members capacity and confidence, to engage in activities for positive change. METHOD ESSA advocacy priorities are broad and diverse, aiming to enhance workforce opportunities to benefit all member groups. These areas include chronic conditions, mental health, rural and remote health, disability, aged care, physical activity, primary healthcare, public health, sport, and, workplace and personal injury. These priorities are affected by enablers including technology and innovation, data and evidence and funding mechanisms such as GST and fee schedules in compensable scheme. All advocacy efforts aim to reduce barriers, enhance enablers and increase access to the exercise and sports science workforce. The advocacy network self-identify interest in priorities and are engaged when opportunities arise to share knowledge, experience and their expertise to inform and shape advocacy. RESULTS In 2023, members were engaged in the development of over 300 submissions and letters. Advocacy efforts resulted in member engagement in meetings with Members of Parliament, Senators, Parliamentary advisors, and senior government officials plus representation on advisory groups for the development of clinical guidelines, strategic plans and resources for allied health. CONCLUSION As the advocacy network emerges from its infancy into the next stage of maturity as an integral part of advocacy for exercise physiology, exercise science, and sport science, a professional and streamlined approach is required. ESSA will grow the network in terms of members engaged and the output.

Shared Vision for Improving Outcomes for Serious Fungal Diseases: Report of a Patient, Caregiver, and Clinician Summit.

Recently, increasing focus on patient input into research and healthcare improvements has fostered expanded patient-centered advocacy efforts. This first pan-fungal disease summit, part of the MYCology Advocacy, Research, & Education effort, brought together patients, caregivers, and mycology experts to better document patient experiences with invasive fungal disease (IFD) and establish priorities for mycology education, advocacy, and research. Patients who had suffered from IFD, their caregivers, clinicians, industry representatives, government officials, and patient advocacy professionals were invited. Patients and caregivers shared their stories and struggles with IFD. Breakout sessions separated mycology experts from patients and caregivers for further discussions to identify commonalities and perceived gaps and to formulate recommendations. The 2 groups then reconvened to develop consensus recommendations. IFD patients and their caregivers shared experiences reflecting the typically lengthy prediagnosis, acute treatment, long-term treatment, and posttreatment recovery stages of IFD. They reported substantial physical, psychological, and financial burdens associated with the IFD experience, particularly related to delayed diagnoses. They reaffirmed a need for coordinated patient-centered education, peer support, and advocacy to document the burden of serious fungal infections. Mycology experts discussed strategies to address gaps in the mycology field, such as insufficient training, inadequate workforce support, and a need to partner more with patient groups. A summit involving patients with IFD, family caregivers, and mycology experts identified a substantial nonclinical burden of disease associated with IFD. Patients and mycology experts prioritized several goals for education, advocacy, and research to raise awareness of IFD and improve outcomes.

Using photovoice to generate solutions to improve food security among families living in remote Aboriginal and/or Torres Strait Islander communities in Australia

The right to food security has been recognised internationally, and nationally in Australia by Aboriginal Community Controlled Health Organisations. This study aims to explore food (in)security and solutions for improvement of food security in remote Aboriginal and/or Torres Strait Islander communities in Australia, from the perspective of caregivers of children within the context of the family using photovoice. Participants took part in workshops discussing participant photographs of food (in)security, including solutions. Themes and sub-themes with associated solutions included traditional food use, sharing as a part of culture, the cost of healthy food, energy and transport, and housing and income. Community leaders used these data in setting priorities for advocacy to improve food security in their communities.

Mapping a research-advocacy-policy agenda on human rights and albinism: a mixed methods project.

Persons with albinism face challenges to their wellbeing, safety, and security, ranging from vision impairment and skin cancer to stigma and discrimination. In some regions, they also face human rights atrocities including mutilation and murder. Research on human rights and albinism is a relatively new field that has gained momentum since the United Nations appointment of an Independent Expert on the enjoyment of human rights by persons with albinism. In this paper, we present the results of a mixed methods study undertaken to identify priorities for research, advocacy, and policy on albinism and human rights. The first component was a synthesis of peer-reviewed and grey literatures at the nexus of albinism, spiritual/cultural beliefs and practices, and human rights. We then conducted a priority-setting survey, informed by Delphi methods, on extant knowledge-practice gaps and research, advocacy, and policy priorities. Inclusion criteria included demonstrated expertise in the field (e.g., peer-reviewed publications, funded research), membership on national or international associations, or advocacy (civil society organizations) of more than 2years in albinism and human rights. Thereafter, we gathered leading researchers, policy-makers, and civil society stakeholders for a Roundtable to gain consensus on these priorities. Access to skin and vision care, and education were not deemed high priority for research, likely because the evidence supporting the need for these is well established. However, they were priorities for advocacy and policy: what is needed is mobilization of this evidence through advocacy and implementation of such services (policy). Other social determinants of health (rurality, poverty, and gender equality) are present as subtext in the findings, more so than priorities for research, advocacy, or policy, despite their preponderance in the lives of persons with albinism. Research was prioritized on stigma and discrimination; advocacy; and witchcraft, but with some differentiation between Global North and Global South priorities. Priorities for research, advocacy, and policy vary in keeping with the explanatory frameworks at play, including how harmful practices and witchcraft are viewed. The lived experience of albinism is profoundly shaped by the social determinants of health (SDOH). Threats to the security and well-being of persons with albinism should be viewed through a human rights lens that encompasses the explanatory frameworks at play.

Society for Maternal-Fetal Medicine Special Statement: Utilizing telemedicine to address disparities in maternal-fetal medicine: a call to policy action

The combination of deserts in maternal-fetal medicine coverage across the United States and the COVID-19 pandemic accelerated the implementation of telemedicine programs for maternal-fetal medicine care delivery. While telemedicine-based care has the potential to facilitate timely access to maternal-fetal medicine services, which can improve maternal and neonatal outcomes, telemedicine is a relatively novel healthcare modality that needs to be implemented strategically. As with any medical service, telemedicine care requires rigorous evaluation to assess outcomes and ensure quality. Important health policy considerations including access to services and insurance coverage have significant implications for equity in the implementation of telemedicine, particularly for reproductive health care following the 2022 United States Supreme Court decision in Dobbs v. Jackson Women's Health Organization that overturned the constitutional right to an abortion. Investing resources and advocating for a rigorous, widely accessible telemedicine infrastructure at this critical moment will establish an important foundation for more equitable pregnancy care. Key advocacy priorities for maternal-fetal medicine telemedicine include (1) expanding insurance coverage of telemedicine across payers and regardless of geographic location, (2) advocating for inter-state licensure parity, (3) increasing access to affordable internet and digital literacy training, and (4) ensuring access to reproductive health care, including abortion care, delivered via telemedicine.

The Intersection of Autism and Transgender and Nonbinary Identities: Community and Academic Dialogue on Research and Advocacy.

Many transgender people are autistic. Community expressions of the autism transgender intersection abound. Some commentators have questioned the proportional overrepresentation of autism among gender-diverse people, suggesting these individuals may not be truly autistic or truly transgender. However, increasing evidence challenges assertions that deny the authenticity of co-occurring autistic and transgender identities. Specifically, research by authors of this article indicates autistic transgender people show neurophenotypes generally consistent with cisgender autistic people and implicit gender phenotypes consistent with nonautistic transgender people. This article features a dialogue between eight leading experts in the field of intersectional autism and gender diversity, including clinicians, researchers, community advocates, and experts who are themselves autistic transgender. Key topics of discussion included: how research findings on autism and gender diversity inform respectful and supportive responses to autistic transgender people; the benefits and harms of increased societal attention toward the autism transgender intersection; and research and advocacy priorities. The expert panel concluded the following: (1) it is important to respect transgender autistic people's wellness and resilience, while also acknowledging the pathologization and stigmatization they face; (2) autistic gender-diverse people are experts of their own identity and should be involved in all aspects of research and clinical care; (3) research is needed to understand the disparities autistic transgender people face; (4) attempts to restrict autistic transgender people's access to gender care are unsupported by existing research; (5) adult gender care may benefit from incorporating universal design principles and neurodiversity-affirming strategies to reduce barriers to care and improve clinician-client communication in treatment delivery and the informed consent process; (6) cross-cultural and cross-societal research will improve best care practices in diverse contexts; (7) research and advocacy must be inclusive across ethnoracial identities, including in leadership and perspectives represented; and (8) a life span developmental framework is needed for adult research in this field.

Food security definition, measures and advocacy priorities in high-income countries: a Delphi consensus study.

To establish an international consensus on the definition of food security, measures and advocacy priorities in high-income countries. A two-round online Delphi survey with closing in March 2020 and December 2021. Consensus was set a priori at 75 %. Qualitative data were synthesised and priorities were ranked. High-income countries. Household food security experts in academia, government and non-government organisations who had published in the last 5 years. Up to thirty-two participants from fourteen high-income countries responded to the Delphi with a 25 % response rate in Round 1 and a 38 % response rate in Round 2. Consensus was reached on the technical food security definition and its dimensions. Consensus was not reached on a definition suitable for the general public. All participants agreed that food security monitoring systems provide valuable data for in-country decision-making. Favoured interventions were those that focused on upstream social policy influencing income. Respondents agreed that both national and local community level strategies were required to ameliorate food insecurity, reinforcing the complexity of the problem. This study furthers the conceptual understanding of the commonly used definition of food security and its constituent dimensions. Strong advocacy is needed to ensure food security monitoring, policy and mitigation strategies are implemented. The consensus on the importance of prioritising actions that address the underlying determinants of household food security by experts in the field from across wealthy nations provides evidence to focus advocacy efforts and generate public debate.

Advocacy: The seventh foundational principle and core competency of rehabilitation psychology.

Advocacy has received increasing attention in the field of psychology over the past few years, including in the subfield of rehabilitation psychology. Psychology has been criticized for over-focusing on individual responses to complex sociopolitical problems. Rehabilitation psychology has tended to do this in much the same way, by placing the onus on individual disabled persons' responses to disability and overlooking the systemic and structural concerns of the environment. Advocacy has a long and important history as a competency for the practice of Rehabilitation Psychology. Yet, rehabilitation psychologists rarely receive formal training or guidance about performing effective advocacy efforts. The original six Foundational Principles include the person-environment relation, the insider-outsider distinction, adjustment to disability, psychological assets, self-perception of bodily states, and human dignity. Beatrice Wright advised that the guiding principles must be subject to review and open to expansion. N/A. N/A. These authors believe that advocacy should be officially adopted as the seventh foundational principle of Rehabilitation Psychology. Rather than define advocacy narrowly as efforts within individual patient or family contexts, we argue that advocacy should be a broad construct of work done alongside the disability community and follow the lead of those with lived experience to avoid unintended consequences of well-intentioned advocacy efforts. We share models of advocacy in the field of psychology, including those most pertinent to rehabilitation psychology. Current disability advocacy priorities are highlighted at the individual, institutional, and discipline levels including interfacing with policymakers. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Transgender College Athletes: A Special Commentary

Recently, multiple bills from various states have attempted to ban transgender athletes from participating in sports. Guided by misinformation, these bills and policies set a dangerous precedent that is overall harmful to the well-being of trans athletes. This article discusses clinical, research, training, and advocacy priorities that should be addressed to protect the rights of trans athletes.

Multi-level change strategies for health: learning from people-centered advocacy in Uganda

BackgroundThe paper analyzes how the Accountability Can Transform Health (ACT Health) program activated bottom-up citizen action to secure government responses and more accountable health services in Uganda. The ACT Health program had two phases—Phase 1 focused on a community-level intervention studied with a randomized control trial, and Phase 2 supported citizen-led advocacy targeting government officials across multiple levels. The focus of this paper is an analysis of Phase 2, when the “people-centered advocacy” approach supported almost 400 community advocates representing 98 health facilities to organize, identify joint advocacy priorities, directly monitor health services, and collaborate on health advocacy campaigns in 18 districts. Most district campaigns focused on the complex, power-laden issue of health worker absenteeism. With a few notable exceptions, iterative cycles of engagement between citizens and the state across multiple levels are infrequently discussed in the formal literature on health accountability.MethodsThis paper is based on a comparative, inductive, practitioner-led analysis of program monitoring data from 18 multi-level health advocacy campaigns. The findings emerge from analysis of a “Heat Map,” capturing grounded accounts of government responses to community-led advocacy.ResultsOfficials in eight out of 18 districts fulfilled or surpassed commitments made to community advocates. Government responses included: increased monitoring, more downward accountability, countering backlash against advocates, applying sanctions for absent health workers, and increased budget allocations. Advocates’ bottom-up advocacy worked in part through triggering top-down responses and activating governmental checks and balances.ConclusionsMethodologically, this article demonstrates the value of analyzing process monitoring and program data to understand outcomes from direct engagement between citizens and the state to improve health services. Survey-based research methods and quantitative analysis may fail to capture signs of government responsiveness and relational outcomes (such as subtle signs of shifting power dynamics) many hope to see from citizen-led accountability efforts. Practitioners’ perspectives on how accountability for health emerges in practice are important correctives to much positivist research on accountability, which has a tendency to ignore the complex dynamics and processes of building citizen power.

Understanding emergency placements for Nova Scotian children in foster care.

To cope with a critical lack of foster families, Nova Scotia's Department of Community Services uses rented private facilities staffed by subcontracted companies, known as "places of safety". Similar models are used across the country, with places of safety intended to be used for emergency placements only. The mean length of stay in a place of safety was 255 nights in 2020. Male children are far overrepresented, as are Indigenous children. Despite the increasing use of places of safety, little is known about the impacts of these short-term and unhomelike environments. Previous research on placement disruption shows that placement change and multiple placements impact children's health, mental health, and attachment behaviour. This paper presents data on the use of places of safety in Nova Scotia and synthesizes existing research on placement disruption to present advocacy priorities and directions for further research.

The relationship between volume of newspaper coverage and policy action for nutrition issues in Australia: a content analysis

ObjectivesUnhealthy diets are a leading risk factor for the global burden of disease. Research suggests that comprehensive, population-level solutions are required to attenuate this problem, though such policies have not been adopted. Increased media attention may lead to government-led policy action through issue definition and agenda setting. The aim of this study was to analyse which nutrition policy issues are covered in print media, and whether media attention correlated with relevant policy actions in Australia. Study design/methodsA content analysis was conducted on newspaper articles published between 1999 and 2019 from 11 major Australian metropolitan newspapers. ResultsOf the policy issues identified, few received meaningful media attention. Of those with peaks in media attention, only fortification and labelling issues coincided with government-led policy actions, while regulating junk-food advertising to children, sugar-sweetened beverage taxation, and the formulation of a National Nutrition Policy did not result in policy outcomes. ConclusionsGiven the limited coverage of nutrition policy issues, the relationship between media attention and policy actions for the captured issues may not be determinable. In addition, factors including social, political, and historical contexts may be stronger influences on policymaking than media attention. Although this study did not demonstrate a relationship between media attention and policy action because of low coverage of nutrition issues, it did identify the media are generally reporting nutrition policy issues with a positive public health framing. Promoting favourable coverage of nutrition policy issues is still an important tool for advocacy globally. Moving forward, increasing the volume of coverage of nutrition issues should be an advocacy priority.

Beyond Binary Narratives of Mental Health Advocacy: Latent Profiles of Mental Health Activists and Advocates With Lived Experience.

In this article, the authors used data from a national survey of mental health activists and advocates (MHAAs) with lived experience of psychiatric disabilities to investigate attitudes toward psychiatric care. The authors distributed a survey, developed by a team led by researchers who were also service users, to both mainstream and more critical advocacy groups and networks (N=547 participants), and they analyzed the data by using latent class analysis (LCA). Four survey variables regarding beliefs about involuntary hospitalization, assisted outpatient treatment, medication, and diagnosis were used to generate latent subgroups. The authors explored associations between key survey variables and latent classes with chi-square tests and analysis of variance. LCA indicated an optimal six-class solution. The classes existed on a spectrum of positions, ranging from highly favorable views of traditional psychiatric practices to highly critical views, with classes in the middle representing distinct profiles of attitudes toward treatment and diagnosis. Significant between-group differences were found for participants' psychiatric treatment histories, motivations to engage in activism and advocacy, and views about mental health care and advocacy priorities. Findings reveal considerable heterogeneity among MHAAs and challenge binary narratives of mental health advocacy.

Exploring the Role of Occupational Therapy and Forced Migration in Canada.

Background. In response to increasing forced migration across the globe, Canadian occupational therapists are returning to the profession's social justice roots by exploring this emergent area of practice. Purpose. This research explores occupational therapy practices with forced migrants in a Canadian context. Method. Grounded in critical epistemologies, the researchers conducted 12 semi-structured interviews with occupational therapists, students, and researchers connected to displacement. Data were analyzed using thematic analysis. Findings. Four themes describe current occupational therapy practices related to forced migration: 1) engaging clients in new environments, 2) translating the everyday, 3) connecting and networking, and 4) advocating for occupational justice. Implications. This research contributes to the advancement of occupational therapy and forced migration by documenting the diverse and fluid nature of occupational therapy roles. Further, the paper outlines promising reflexive practices while forwarding advocacy priorities for (occupational) justice.

Child Poverty and Health in the United States: Introduction and Executive Summary.

Child Poverty and Health in the United States: Introduction and Executive Summary.

Types and relevance of advocacy in destination-based non-profit organisations - Evidence from New Zealand ecosanctuaries

This paper identifies advocacy objectives and priorities by non-profit organisations at the conservation-visitation nexus in tourism destinations. Focussing on ecosanctuaries, a type of protected area in New Zealand, it employs a pragmatic qualitative approach using 14 semi-structured interviews with leading actors in and related to the ecosanctuaries as an empirical basis. The Advocacy Strategy Framework is applied during data interpretation. Community involvement through volunteering and visitation, and fundraising emerge as central advocacy objectives of the ecosanctuaries. By determining the advocacy priorities, this paper illustrates the conflicts of interest that the ecosanctuaries, as non-profit organisations, balance and negotiate. It expands existing concepts of non-profit organisations' advocacy strategies by differentiating target audiences for advocacy communication and relevant actions. The paper further demonstrates that volunteers in non-profit organisations are subject to a distinct set of advocacy efforts.

Caring for refugees and newcomers in the post-COVID-19 era: Evidence review and guidance for FPs and health providers.

To guide clinicians working in a range of primary care clinical settings on how to provide effective care and support for refugees and newcomers during and after the coronavirus disease 2019 (COVID-19) pandemic. The described approach integrates recommendations from evidence-based clinical guidelines on refugee health and COVID-19, practical lessons learned from Canadian Refugee Health Network clinicians working in a variety of primary care settings, and contributions from persons with lived experience of forced migration. The COVID-19 pandemic has amplified health and social inequities for refugees, asylum seekers, undocumented migrants, transient migrant workers, and other newcomers. Refugees and newcomers face front-line exposure risks, difficulties accessing COVID-19 testing, exacerbation of mental health concerns, and challenges accessing health care, social, and settlement supports. Existing guidelines for clinical care of refugees are useful, but creative case-by-case strategies must be employed to overcome additional barriers in the context of COVID-19 and new care environments, such as the need for virtual interpretation and digital literacy skills. Clinicians can address inequities and advocate for improved services in collaboration with community partners. The COVID-19 pandemic is amplifying structural inequities. Refugees and newcomers require and deserve effective health care and support during this challenging time. This article outlines practical approaches and advocacy priorities for providing care in the COVID-19 context.