Advocacy Perspectives Research Articles

Tackling Multiple Biologic Failure in Psoriasis: Research and Advocacy Perspectives.

Psoriasis is an immune-mediated skin disease commonly treated with biologic therapies. While there are currently 12 different biologics approved for psoriasis, there still exists a challenging subset of patients who have tried and failed biologics from multiple classes. In this commentary, we discuss the research and advocacy-based efforts by the National Psoriasis Foundation (NPF) and academic collaborators to understand and better support multiple biologic failure (MBF) psoriasis patients. The NPF MBF registry will gather clinical and demographic information on MBF patients to improve therapeutic outcomes, while legislative efforts through NPF Capitol Hill Day aim to advance federal laws in support of all psoriasis patients, with a recent focus on access to biologic therapy. Together, these 2 efforts will improve the care for all people living with psoriasis, including those experiencing MBF.

Why Liver Cancer Hits Home: Bridging Healthcare Disparities in the Asian American and Pacific Islander Community.

Asian Americans and Pacific Islanders have an increased risk of developing liver cancer and higher risk of death compared to non-Hispanic White individuals. The role of individual-level risk factors, social determinants of health, and barriers navigating health systems present unique challenges in obtaining liver cancer care for these patients. Additionally, the Asian American and Pacific Islander population is a heterogenous group originating from several different countries and speaking various languages, and they are often underrepresented in cancer clinical trial populations. This article describes the challenges faced by Asian American and Pacific Islander patients with liver cancer from the clinician, research, and patient advocacy perspectives and proposes targeted solutions to reduce healthcare disparities in this group.

Perception of online education during COVID-19: Online Photovoice (OPV) and ecological systems theory

ABSTRACT In this research, we used Community-Based Participatory Research, Ecological Systems Theory and active interdisciplinary social advocacy perspectives as part of our theoretical framework. Our sample consisted of 530 counselling undergraduate students with 481 consenting to participate by sharing the most important main facilitators and barriers for their online or distance education during COVID-19 pandemic. We used Online Photovoice methodology to get the students lived experiences focusing on their counselling major and Online Interpretative Phenomenological Analysis to analyse shared experiences. Thirteen main facilitators emerged (e.g. The contribution of technology in distance education, 22%; computer, PC: Technological tools, 18%; internet, 14%) and 22 main barrier themes emerged (e.g. lack of technological tools and related knowledge, 16%; transition to distance education, 13%; emotions that are difficult to cope with, 12%). We also examined how participants attribute these facilitator and barrier themes to Ecological Systems Theory levels.

Gender and the environmental health agenda: A qualitative study of policy, academic, and advocacy perspectives in Peru

IntroductionWomen, especially those living in low-and-middle-income countries experience increased exposure to and impacts of environmental threats. Peru is especially susceptible, with high levels of pollutants associated with extractive industries, and climatic-related disasters exacerbated by climate change. International policies and movements are increasingly calling for a gendered approach to environmental health. We aimed to understand the current Peruvian research, advocacy, and policy landscape at the environment-gender-health nexus. MethodsWe held 18 in-depth semi-structured interviews with key informants from the Peruvian Government, academia, and non-governmental organizations to explore how a gender-sensitive approach and interdisciplinary environmental health collaborations are delivered. We used thematic analysis to compare gender approaches, priorities, and barriers/facilitators to delivering projects within this nexus. ResultsWe remotely interviewed 6 representatives of each sector between July 2020 and March 2021. Interviewees mentioned the detrimental role of weak institutions, multilevel corruption, and the lack of interdisciplinarity and intersectorality across environmental health programs and research. They described several barriers to successful collaboration across organizations and sectors, including funding scandals related to extractive economies, high staff turnover impairing long-term program implementation, and machismo culture in organizations and communities. Women's empowerment was described as important for successful program delivery, especially in female-led associations. Some interviewees emphasized the invisibilization of vulnerable groups, such as girls, teenagers, pregnant women, victims of gender-based violence, and LGBTQI+ people. ConclusionsThese qualitative findings highlight the multiple and inter-related contextual issues faced by environmentally threatened communities in Peru, and how macrostructural barriers contribute to a paucity of sustainable, gender-oriented, environmental health projects.

Saudi Women's Attitudes Toward Advocacy for Women's Rights

There is a growing women's rights advocacy movement in Saudi Arabia—much of which explicitly targets the male guardianship system. In this system, Saudi women are restricted by the male-dominated culture and face obstacles that hold them accountable to their male guardians. Recent changes in this system have become crucially important to women's lives, but still, leave women lacking full freedom. This exploratory study provides a thematic analysis of 16 Saudi women's advocacy perspectives by focusing on the deeper meanings of their expressed attitudes toward the male guardianship system in Saudi Arabia. Analysis revealed conflicting attitudes toward women's advocacy for women's rights. Women who were hurt by the system raised concerns about being labeled as advocates. They feared being socially judged and having their families shamed for advocating against social norms and principles of Islam. These concerns led them to use fake social media accounts to support advocates. Those who supported the male guardianship system expressed their worries about the next generation being influenced by outside ideologies and abandoning their Islamic values. This paper concludes with recommendations for future social work practice and scholarship.

Advocacy perspectives for strengthened global tobacco control and taxation

Advocacy perspectives for strengthened global tobacco control and taxation

The Initial Development and Validation of the Perceptions of Disability Scale (PoDS): Results from Pilot Studies

The purpose of this study was to report the initial process of developing and validating the Perceptions of Disability Scale (PoDS), a scale designed to map a continuum of sympathy, empathy, and advocacy perspectives on people with disabilities. We first created a 30-item scale based on a thorough literature review and the findings of a previous qualitative study. Then we further refined and validated the scale through 3-phase approach as well as internal consistency reliability evidence and validity evidence based on content, response process, and internal structure. Results suggest that the final 21-item scale has excellent reliability and validity. Suggestions for how the scale can be used in recreational therapy practice and human-service related trainings, and for future research are provided.Subscribe to TRJ

“A Touch of Sugar”: A Qualitative Study of the Impact of Health Beliefs on Type 1 and Type 2 Diabetes Self-Management Among Black Canadian Adults

ObjectivesBlack Canadians have higher rates of diabetes and complications compared with White Canadians. However, research on diabetes self-management in this community is lacking. We conducted a qualitative study to explore diabetes self-management in the Black Canadian community using the lens of the Health Belief Model. MethodsForty-three individuals who identify as Black Canadians, living with or caring for a person with diabetes, were recruited. Data were collected through focus groups and interviews, and then analyzed using content analysis. ResultsWe found that participants appreciated they are susceptible to diabetes based on family or peer experiences. Perceived severity is variable for which some believe that diabetes is only a “sugar problem,” and the majority highlighted a perceived lack of knowledge about diabetes complications. Perceived benefits to treatment included prolonging life and cleansing one’s body. Perceived barriers included lack of culturally appropriate dietary advice, lack of shared decision-making driven by a language barrier and cultural mismatch between patient and provider, socioeconomic status and difficulty navigating and accessing the Canadian health-care system. Peers, family members, churches and online platforms served as the main information sources and cues to action, influencing each of the 4 aforementioned categories. A number of solutions were proposed by the participants to address the barriers from patient, health-care delivery and health advocacy perspectives. ConclusionsBlack Canadians face unique barriers to diabetes self-management, some of which are rooted within health belief systems. Avenues for intervention include peer education through narratives and a renewed focus on providing culturally appropriate care.

Caring for Persons Living With Dementia During the COVID-19 Pandemic: Advocacy Perspectives From India.

The Coronavirus disease 2019 (COVID-19) pandemic has presented an unprecedented threat to global public and psychosocial health. Certain vulnerable populations, especially the older adults, are at disproportionate risks both to the physiological and social effects of the outbreak. A special section among them who face unique challenges during this pandemic, are those living with neurocognitive disorders, like dementia. Limited research in the field shows ApoE4 allele to confer an increased risk for COVID-19 severity, while the behavioral problems associated with dementia reduces compliance to precautionary measures, thereby exposing them to the virus and increasing caregiver strain. Reduced healthcare access, limited resources and fear of the infection act as major barriers to dementia care during such a crisis. Besides, there are the additional burden of stigma, abuse, ageism and financial impoverishment. Institutionalization, loneliness and lack of stimulation can potentially accelerate the cognitive decline and worsen the behavioral and psychological problems. India has been one of the worst hit countries by COVID-19 and shares a significant dementia load. As the country is aging fast along with the world, this commentary reviews the risks of people living with dementia during the pandemic and discusses certain advocacies for their care.

Advocacy Perspectives on the Greenbook: Interviews with Domestic Violence Advocates from Three Federally Funded Greenbook Sites

AbstractBetween 2000 and 2005, six sites engaged in local implementation of recommendations made in Effective Intervention in Domestic Violence and Child Maltreatment: Guidelines for Policy and Practice (the Greenbook), published by the National Council of Juvenile and Family Court Judges in 1999. This three‐part article reflects recorded conversations in June and July of 2019 and captures the perspectives of five domestic violence advocates who participated in local Greenbook implementation (in El Paso County, CO; San Francisco County, CA; or Santa Clara County, CA) and their thoughts on the Greenbook work then, since then, and going forward.

Lost in knowledge translation: Our shifting research landscape

ABSTRACTIn 2018 there is a new research modality. Research is increasingly produced by individuals and organizations not formally affiliated with academic institutions; based on funding that does not come from the public sphere; aligned with and intended to support advocacy perspectives and is designed for use by particular communities and agents. The new research modality presents challenges and opportunities. While all of these new agents in the research landscape are well educated and qualified to conduct research, in many cases they are operating outside of the traditional research environment and perhaps with a different set of “research cultural norms”. This new research modality in fact begs for a solution similar to that promoted within the health sciences field – a model of knowledge translation. A panel of researchers drawn from across the new research landscape will engage with information professionals to discuss six key questions.

Sexual Orientation and Gender Identity Issues in Schools: Advocacy, Research, and Global Perspectives

Sexual Orientation and Gender Identity Issues in Schools: Advocacy, Research, and Global Perspectives

Strengthening international patient advocacy perspectives on patient involvement in HTA within the HTAi Patient and Citizen Involvement Interest Group \u2013 Commentary

Plain Language SummaryHealth Technology Assessment (HTA) is an evidence-based decision-making process, focusing on evaluating health technologies for funding within a healthcare system. ‘Health technologies’ include medications, medical devices, diagnostics, medical procedures and services. Health Technology Assessment international (HTAi) is a global society for those who produce, use, participate in, or encounter HTA. The HTAi Secretariat supports special interest groups within HTAi. One such special interest group, the Patient and Citizen Involvement in HTA Interest Group (PCIG), focuses on strengthening patient involvement in HTA. PCIG’s members are from HTA agencies, research, industry, and patient organisations. We describe the steps PCIG has taken to form an international panel of patient advocates (the Patient Panel) as an autonomous group within its governance structure that reports directly to the PCIG Steering Committee. The Patient Panel was established in order to strengthen meaningful patient involvement in HTA by working co-productively with other PCIG members to develop resources accessible to patient organisations.Patient advocates known to be active within HTA in their own countries were invited to form the inaugural group, with one person appointed to chair the group for the first year. Documentation had been prepared to inform potential members and set out potential roles as seen by the Steering Committee. The appointed Patient Panel is defining its own terms of reference, goals and objectives. The Panel Chair is a member of the PCIG Steering Committee, and is mentored by the retiring PCIG chair. A registry of activities is part of monitoring and evaluation.BackgroundHealth Technology Assessment (HTA) is an evidence-based decision-making process, focusing on evaluating health technologies for funding within a healthcare system or medical insurance system. ‘Health technologies’ are understood broadly, and include medications, medical devices, diagnostics, medical procedures and services. Health Technology Assessment international (HTAi) is a global society for those who produce, use, participate in, or encounter HTA. The HTAi Secretariat supports special interest groups within HTAi, including the Patient and Citizen Involvement in HTA Interest Group (PCIG), which focuses on strengthening patient involvement in HTA. PCIG’s members come from HTA agencies, research, industry, and patient organisations.Main bodyWe describe the steps the PCIG has taken to form an international panel of patient advocates as an autonomous group within its governance structure, reporting directly to the PCIG Steering Committee. Patient advocates known to be active within HTA in their own countries were invited to form the inaugural group. One person was invited to chair the Panel for the first year of its operation, based on the candidate’s experience of working across diseases and countries, and being new to HTAi. Documentation was prepared to inform potential members of the Panel and set out potential roles as seen by the Steering Committee. The Panel came into being in March 2016 and is now setting out its own working principles, goals and objectives. The Panel Chair is a member of the PCIG Steering Committee, and is mentored by the previous PCIG chair. A registry of activities has been set up as part of monitoring and evaluation.The Patient Panel is intended to provide a focus within the PCIG for patient advocates to work among themselves and co-productively through the PCIG Working Groups to develop mutual understanding and strengthen meaningful patient involvement in HTA internationally. Patient advocates can benefit from a clear understanding the evidence requirements within HTA and how information can be effectively presented by patient groups to decision-making bodies.ConclusionThe HTAi Patient and Citizen Involvement Interest Group has set up a Patient Panel consisting of patient advocates. The intent is to work co-productively to advance patient involvement in HTA.

NGO's Advocacy in Bangladesh and Other Developed Countries: A Comparison

In recent years, advocacy groups play a unique role in advocacy movement and they are eager to create connection among politics, democracy and rights in favour of the poor people. They play as powerful drivers of social development by making valuable contribution in promoting human rights and social, economical, cultural and environmental protection. It is worth mentioning that non-government organisations (NGOs) act as advocacy groups and have been encouraged to engage more directly in advocacy. Some of their advocacy campaigns have drawn the attention of many in both the developed and developing countries. The paper tries to identify NGOs as advocacy groups and how it advocates for the disadvantages and marginalised groups in Bangladesh and other developed countries. It also compares two form of NGO's advocacy from Bangladesh and developed countries. The study primarily draws on established secondary sources of information. The paper asserts that though there is some difference between two NGO's advocacy perspectives, but there are also some similar issues that NGOs can help to raise voice for those who have been historically marginalised and make institutions of governance transparent and accountable to citizen.

Summary of the 2016 Partners Against Mortality in Epilepsy (PAME) Conference.

Authors: Kevin D Graber, MD, Jeffrey Buchhalter, MD, PhD, Elson So, MD, Rainer Surges, MD, Detlev Boison, PhD, Franck Kalume, PhD, Cyndi Wright, Brian Gehlbach, MD, Jeff Noebels, MD, PhD, Vicky Whittemore, PhD, Elizabeth J. Donner, MD, MSc, Tom Stanton, MPP, Henry Smithson, MD, Jane Hanna, Masud Seyal, MD, PhD, Philippe Ryvlin, MD, PhD The third biannual Partners Against Mortality in Epilepsy (PAME) conference was held in Alexandria, VA from June 23-26, 2016. This was an intimate meeting of clinical and basic scientists, clinicians, people affected by Sudden Unexpected Death in Epilepsy Patients (SUDEP) in a loved one, people living with epilepsy and patient advocate organizations. Plenary sessions have been summarized by moderators, including: 1) Mortality in people with epilepsy: epidemiology and surveillance. 2) Mortality in children. 3) What do we know about the factors that predispose certain people to die from a seizure? 4) What are the events that occur during and after a seizure that cause a death in SUDEP? 5) What are the options for prevention now and in the future? 6) Advocacy perspectives: how can we speed up awareness and prevention? 7) Updates and discussion on select programs in mortality research. Breakout sessions allowed for a more focused audience. Those summarized here are: Frequent non-SUDEP causes of mortality in people with epilepsy; Mechanisms of SUDEP; Lessons learned in grief and how to better support families; Future directions for research to impact prevention; and How do we improve SUDEP risk disclosure? While significant progress has been made with review of human mortality in epilepsy and study of animal models, this meeting emphasized the need for: better understandings of the epidemiology of SUDEP, advances in the understandings of mechanisms, continued search for biomarkers and preventative measures, patient education, increased awareness, continued advocacy for patient and family support and research funding.

Independent advocacy in adult support and protection work

Purpose – The purpose of this paper is to consider independent advocates’ perspectives on their roles in Scottish adult support and protection (ASP) work, and the facilitators and barriers impacting on these roles in practice. Design/methodology/approach – Semi-structured interviews were conducted with 20 managers and staff from six independent advocacy agencies operating across nine local authority areas. Findings – Participants described key roles in supporting individuals to understand their rights and to negotiate ASP processes. They conceptualised their independence to be the key distinguishing feature of their role. Participants noted lower than expected rates of referral of ASP concerns to advocacy and variable experiences of communication with the statutory services. Particular emphasis was placed on the late stage at which many referrals are received. Awareness, understanding and acceptance of advocacy amongst the statutory services was felt to vary at both practice and strategic levels. Research limitations/implications – The sample is not a representative one. However, some commonalities are worthy of note: particularly the participants’ commitment to ASP work and the perceived impact of statutory agencies on their involvement in it. The issue of late referrals merits some consideration at a national level. Issues of awareness and understanding amongst the statutory services, and their links with referral rates, are for further local-level exploration. The independent advocacy community might wish to discuss further the impacts on them of incorporation into statutory frameworks. Originality/value – Advocacy perspectives have been little drawn on in pre-existing ASP research.

NICU Follow-up Care: The Developmental and Advocacy Perspectives

The responsibility for the medical and developmental care of the premature infant falls to the neonatologist, the general practitioner, subspecialists, and therapists, as well as the family and available community resources. This article reviews the landscape of developmental delays among former premature infants and offers a framework for screening and addressing these delays in infancy and early childhood. A holistic approach to developmental delays, especially with regard to public benefits can mobilize resources early to assist families and shape the environment for the child both at home and at school. The medical and developmental team working together can improve the developmental trajectory of a child.

Patient Advocacy in Research

Patient Advocacy in Research

DISCUSSION OF The Role of Client Advocacy in the Development of Tax Professionals’ Advice

INTRODUCTION dvocacy is an important construct in research on the judgment and decision-making of tax professionals, particularly given this major distinction in role requirement from that of auditors. Extant research has either examined advocacy’s effects directly e.g., Johnson 993; Mason and Levy 2001; Kahle and White 2004; Stephenson 2007 or inferred that biases in udgment were due to this advocacy role e.g., Cloyd and Spilker 1999; Hatfield 2000 . However, iven other research evidence to the contrary, some tax research does not find a direct link etween measures of advocacy and tax advice e.g., Kadous and Magro 2001; Barrick et al. 2004 . In order to provide insights into these mixed findings, Bobek et al. 2010 examine whether dvocacy is an inherent characteristic exogenous as has been assumed by prior research, or if nstead it may be partially influenced by characteristics of the client endogenous . Specifically, obek et al. 2010 allow advocacy to vary based on both the inherent advocacy attitudes of tax rofessionals and client characteristics. Further, they examine how advocacy influences several rocessing and outcome variables. Results indicate that advocacy is not completely exogenous. pecifically, advocacy is found to be partially dependent on client-specific characteristics, with ower levels of client-specific advocacy displayed for riskier clients. These results suggest that a ailure to account for the client-specific portion of advocacy may lead to inaccurate conclusions egarding its effects. Further, by examining advocacy’s influences on several processing and outome variables, the authors suggest that research can better differentiate biased decision making rom purposeful utility-maximizing consideration of client characteristics. Bobek et al. 2010 contribute to the tax literature by highlighting two advocacy perspectives general and client-specific , potentially resolving mixed results of prior research and by providing framework for future research that examines advocacy. My comments will focus primarily round two main issues: the current emphasis of endogeneity versus exogeneity in the paper and he appropriateness of the model of hypothesized relationships as it pertains to future research.

Consumer and advocacy perspectives: What do our patients think about their care? What can advocates tell us on behalf of patients and of persons who need treatment?

Editor's Note: To encourage attention to medical errors in psychiatry, Psychiatric Services introduced the Patient Safety Forum in December 2003. Expert discussants are invited to address important questions in this area. Benjamin Grasso, M.D., is guest editor of the forum. Contributing to this month's forum are Virginia Green, a mental health care consumer; Carol Carothers, executive director of NAMI Maine, and Peter Driscoll, M.S.W., director of Amistad, Maine's largest peer support and recovery center; Dollie Hunt-Wilson, another consumer; and Christine Siegfried, M.S.S.W., and Jenifer Wood, Ph.D., of the National Center for Child Traumatic Stress.