Advocacy For People Research Articles

Family Medicine’s Role in Policy and Advocacy: Reflections From a Team’s Advocacy for People With Disabilities

Family Medicine’s Role in Policy and Advocacy: Reflections From a Team’s Advocacy for People With Disabilities

The impact and value of the Parkinson’s nurse specialist to people with Parkinson’s and their care partners: a grounded theory qualitative study

BackgroundWhere available, Parkinson’s Nurse Specialists (PNS) provide a range of care, support, guidance, and advocacy for people with Parkinson’s (PwP), and, where appropriate, their care partners (CP). Parkinson’s is a complex and progressive condition. Consequently, evaluating health outcomes is not a reliable method to understand the value and impact of PNS. Previous research has identified PNS can improve the subjective well-being of PwP in the community, also that barriers to care include heavy caseloads and a lack of time. Yet little is known about the value of the role of the PNS, particularly about the impact of pharmacological management and review. This research aims to close this research gap by providing explanatory theories of the impact and value of PNS to PwP, their CP, and other professionals.MethodsA social constructivist grounded theory approach was used. Semi-structured interviews were conducted with three groups, PNS, PwP, and CP. Interviews were analysed using NVivo for coding and categorising and Word for memo-writing. Data was analysed inductively and iteratively to identify contexts, social processes, actions, and behaviours, before final emergent theories were identified.Results46 semi-structured interviews (PNS 18, PwP 19, CP 9) led to four data categories and 13 sub-categories that delineated PNS value. (1) Expert Counsel; provision of emotional support, education, and lifestyle guidance; CP inclusion; provision from diagnosis; and across all stages of Parkinson’s. (2) Conduit of Care; signposting, referral, and connection to PwP, CP, others; PNS barriers and facilitators; (3) Team/Partnership; continuity and partnership, ‘working together’; (4) Pharmacological Support, PNS prescribing; concordance; speed of treatment. Where PNS were accessible they could offer personalised support and partnership, so providing person-centred care that improves health and well-being.ConclusionWhere a PNS is accessible due to service availability and manageable caseloads, to provide person-centred care, they deliver several benefits to PwP and CP which improve health and perceived well-being. Where PNS are not available, PwP and CP often struggle to manage their Parkinson’s with negative impacts on health and well-being.

Mental health and support for rigorous tobacco control strategies in South Australia

IntroductionTobacco endgame strategy includes policies to end the tobacco epidemic. As tobacco smoking prevalence is higher among people with mental health conditions (MHC), understanding the impact of rigorous tobacco control...

Living, Caring, Learning - Thinking outside the box to solve care challenges in a rare blood disorder

Abstract A specialist nurse for over 20 years, Sandra reflects on her experience of finding ways to deliver effective care for a young girl with a very rare clotting disorder. Symptoms of the girl’s disorder were evident from birth and through an emergency use request Sandra and the care team enabled her family to access a treatment that at the time was in clinical trial. Poor venous access meant there was a need to adapt how treatment was administered and she worked with the girl’s parents to ensure that she was treated effectively. Alongside educating the parents, Sandra highlights the importance of her role in educating co-workers and other hospital staff likely to come into contact with the girl, to ensure that she always had access to timely and appropriate care. She also reflects on other instances where thinking creatively enabled patients in her care access to treatments that may not otherwise have been accessible. Now retired, Sandra continues to be involved in advocacy for people with bleeding disorders.

Beyond the institution versus home care dichotomy: Lessons from a feeding‐tube medical home

AbstractDecades of rights‐based advocacy for people with disabilities have transitioned long‐term care in the United States from institutional settings to home‐based care provided by interdependent care networks. This paper argues that policies and practices within these home‐based care systems unintentionally produce and often perpetuate unrecognized structural violence on the recipients of care and the caregivers. Understanding the caregivers' experiences through a case study of a Facebook feeding tube family support group exposes the geographic realities and ableist underpinnings of the home‐based care model that undergird this violence. Further, I illustrate the contradictions of “home is best” ideology by focusing on three interwoven themes: structural dependency on unpaid mother‐experts, spatio‐temporal erasure through decentralization, and invasive surveillance structures. This research attends to how home‐based care, as a practice and a place, reflects broader patriarchal, gendered, and neoliberal concepts of autonomy and individual rights as expressed through policies like “person‐centered” care and the medical home model. While this analysis has theoretical, methodological, and policy implications, more important is the contextualization of family experiences that sometimes impacts life and death.

From the medical model to the recovery model: Psychologists engaging in advocacy and social justice action agendas in public mental health.

There is increasing recognition of the need for civil rights advocacy for people with mental illness, as basic human rights continue to be violated in mental health systems. Relatedly, an elevated call for recovery-oriented care creates new opportunities for psychologists to act as social change agents and advocates for patients in state hospital and community settings. Despite lack of specific preparation and training to take on this role, psychologists' overall training places them in a unique position to advocate in many ways. This can be for individuals in the system (patients or staff), for the discipline of psychology, as well as acting as advocates for the continued growth of recovery-oriented approaches, more socially just practices in systems of care, and by engaging in public policy transformation. Psychologists, through creating cultural change, can work to advocate for a transformation from a medical model to a recovery-oriented care model, which focuses on building meaningful lives, autonomy, and rights of the individual. We discuss the many ways in which psychologists can act as advocates in state hospitals and community settings via diverse mechanisms, including at a policy level, the challenges that they encounter, and ways to overcome these. Future directions and ways to increase the effectiveness of advocacy efforts are also discussed. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Data literacy and technology impacting libraries

PurposeThis paper aims to focus on data literacy and its use with technology in libraries. The trends in technology and data literacy emphasize making information accessible and easily usable for purposes of informed decision-making.Design/methodology/approachSystematic literature review is done, exploring blogs and wikis, to collect information on the ways in which data literacy is being and can be used in libraries.FindingsIt is found that the gap between the information user and the information provider is bridged by data literacy training. Also, that data literacy, technological savviness, people advocacy and business acumen are all essential in bringing about employee-centric workplace.Originality/valueThis study concludes that change management and data literacy in technology-based environments are necessary especially now, and in libraries of the future.

Leveraging the Design Thinking Model to address campus accessibility challenges and assess perceptions of disability awareness

ABSTRACT An estimated 19% of students enrolled in postsecondary education in the US have a disability. However, students with disabilities often face barriers, including accessibility challenges, that result in lower attendance and graduation rates. It is therefore critical that universities take action to ensure campuses are fully inclusive and accessible. Using the Design Thinking Model, a workshop was conducted at a large Southeastern University to bring together a diverse group of stakeholders (n = 32) to brainstorm innovative solutions to accessibility challenges. Four potential solutions were generated that aimed to improve campus infrastructure, the mobile map application, and general advocacy of people with disabilities, and to establish a task force to ensure that addressing accessibility concerns remains a long-term priority. After the workshop, participants reported having greater knowledge of accessibility policies, awareness of accessibility issues on campus, and an increased ability to address accessibility issues when they arise. Participants without disabilities also reported being more likely to notice accessibility challenges on campus and felt more confident talking to individuals with disabilities. Workshops that leverage the Design Thinking Model show promise in generating solutions that could tackle accessibility challenges on postsecondary campuses and increase knowledge of university policies and procedures related to accessibility.

‘Visualizing dysfluency’: An interview with Conor Foran

In 2018, designer Conor Foran presented his work on Dysfluent Mono, a typeface that represents the vocal repetitions of stammered speech, at the symposium Metaphoric Stammers and Embodied Speakers at University College Dublin, Ireland. In 2020, Foran self-published the first issue of Dysfluent Magazine, a magazine about the positive experiences of people who stutter that is set exclusively in Dysfluent Mono. Maria Stuart and Daniel Martin had the occasion to interview Foran on his work in both typography and advocacy for people who stutter.

A national survey of nurses who care for people with intellectual and developmental disability

Objective: To describe the roles that Australian nurses play, the breadth of skills that they deploy, and the range of contexts in which they practice. Study design and methods: This cross-sectional study used a descriptive survey where data were collected online using Qualtrics©. Survey respondents were nurses whose primary role was caring for people with intellectual and developmental disability. In addition to demographic data, the main outcome measures were: nursing roles, practice and context. Results: Complete responses were collected from 101 nurses; 78 females and 22 males completed the survey, the majority of whom (n=70) were from New South Wales. The major focus of care was direct assessment and care, followed by supervision of support workers, education, and advocacy for people with intellectual and developmental disability. Physical healthcare was consistent across body systems, as it was for all adaptive behaviour domains. Support for mental illness was more likely to be for depression and anxiety. Nurses liaise with a multitude of health and social agencies as part of their nursing practice. Discussion: This is the first study to capture the roles, practice and contexts of these Australian nurses. Nurses caring for people with IDD play a variety of roles and engage in a vast array of practice related to the physical and social needs of people with intellectual and developmental disability across the whole of the lifespan and in multiple, disparate contexts. Conclusion: It is important for the ongoing care of people with intellectual and developmental disability that the value added by this nursing workforce not be overlooked as disability and health policies evolve.

Evaluation of Demographic Variables on the Knowledge and Prevention of Cholera: A Case Study of Durumi, Abuja, Nigeria

Cholera remains a disease of public health importance globally and particularly in the developing countries including Nigeria. This study evaluated demographic characteristics (age, gender, educational level, religion) in Durumi community in relation to the knowledge and prevention of cholera so as to adequately report them and proffer solutions to reduce the disease occurrence by selecting 360 participants. Data obtained were analyzed using descriptive statistics of percentages (%), frequency counts and mean. Inferential statistics of T-test, ANOVA and regression used to analyze the variables at 0.05 significant levels. Age had significant influence on knowledge (p = v 0.02) and prevention (p < 0.021) of cholera. The younger people appeared to have more knowledge and prevention of cholera than the older people. Gender was significant to knowledge (p = 0.020) and prevention (p = 0.044) of cholera. The educational level was also significant to knowledge (p = 0.000) and prevention (p = 0.000). Religion was significant to knowledge (p = 0.03 and prevention (p =0.004) of cholera. Demographic variables have significant effect on knowledge and preventive measures of cholera P value < 0.05 in all variables tested. However, younger age group (< 50 years), females contributed higher mean score, people with formal education, Christian and Muslims all appeared more knowledgeable and more in tuned with preventive measures of cholera. Therefore, there is the need to use targeted health education for advocacy for people with no formal education, above 50 years, and others on cholera knowledge and prevention.
 Keywords: Demographic variables, cholera, Abuja, Health education.

#Changethedate: Advocacy as an on-line and decolonising occupation

ABSTRACT Introduction: Advocacy promotes equity and social justice and, in Australia, this involves decolonising colonial hegemony and dominant practices. Aboriginal and Torres Strait Islander people use the Change the Date campaign as one mechanism to raise awareness of ongoing inequities resulting from colonisation. Although the literature highlights Aboriginal and Torres Strait Islander people’s advocacy, it does not capture how Aboriginal and Torres Strait Islander people’s advocacy operates within the context of ‘occupations.’ This research aimed to explore how Aboriginal and Torres Strait Islander people experience and express advocacy as an occupation, via an on-line platform. Method: Indigenous Standpoint Theory and cultural interface provided a methodological framework, privileging Indigenous knowledge and culture and underpinning the decolonising documentary analysis. Data were collected from eight Facebook pages managed by Aboriginal and Torres Strait Islander people and analysed using thematic analysis. Results: Three themes describing Aboriginal and Torres Strait Islander people’s experience and expressions of advocacy emerged. The first theme focused on the Australian context and identity, where racism was the common thread. The second theme related to the protective and risk factors of social and emotional well-being. Finally, the third theme related to advocacy as an occupation, highlighting how this occupation occurred via Facebook. Conclusion: Aboriginal and Torres Strait Islander people continue to survive the harsh environments created by Australian contexts. Aboriginal and Torres Strait Islander people's advocacy illustrated how decolonising occupations are essential to address systemic issues, and additionally provided an opportunity to participate in cultural occupations.

Migration manifestos in the 2010s: performing border dissent between social action and utopia

ABSTRACTOver the last decade, the restrictions on human movement have inspired the drafting of numerous ‘migrant manifestos' in advocacy of people on the move. This article engages with this underexplored corpus investigating its role in reconfiguring solidarity and calling for social action by use of a performative language. Considering the ‘Migrant Manifesto' by Immigrant Movement International, the ‘Charter of Lampedusa' and ‘La Déclaration des Poètes’ by Patrick Chamoiseau under the lens of performative studies and postcolonial theory, I will examine their implications and limits in relation to the debate on cosmopolitanism, agency and advocacy in the globalised present.

Treatment of Individuals with Disabilities throughout History and across Religions in Libya

This article describes historical eras’ and religions’ influences on Libyan people’s attitudes toward individuals with disabilities. This article depicts the emergence of ancient civilizations and religions (e.g. the Pharaoh era, the Greek and Roman Empires, Arab immigrant civilizations, and the Ottoman and Italian Empires) in Libya and assesses how these civilizations’ cultures have shaped Libyan people’s opinions toward and acceptance of people with disabilities. This article also reviews the Libyan literature about disabled people throughout the country’s history. In doing so, this study describes the impact of ancient civilizations on Libya’s current population. It also expresses the impact of divine religions and contemporary invasions. Ultimately, this article is intended to raise people’s awareness of fair advocacy for people with disabilities’ rights.

Повышение гражданской активности людей с инвалидностью

В Украине формируется нормативно-правовое поле включение людей с инвалидностью в процессе развития демократического государства через усиление их гражданской активности. Методика исследования включала методы кабинетного исследования, фокус-группы, глубинное интервью, анкетирования и включала людей с инвалидностью возрастом 18-55 лет а также их родственников, друзей, представителей власти, жителей города позволила констатировать недостаточный уровень гражданской активности людей с инвалидностью. Качественной мотивацией для включения людей с инвалидностью в активную общественность деятельность могут быть совместные инициативы власти и общественных организаций, одной из форм которых могут быть проекты социальной направленности для развития демократического общества. Опыт деятельности Благотворительной организации «Социальный фонд» описан в этой статье.

Epistemic struggles: The role of advocacy in promoting epistemic justice and rights in mental health

Advocacy for people using health and social care services is widely promoted but its theoretical foundation is under-developed and its impact poorly conceptualised. This paper explores the liberatory potential of independent advocacy, using Fricker's concept of ‘epistemic injustice’ as a framework. People experiencing mental distress are particularly vulnerable to epistemic injustices as a consequence of deeply embedded social stigma resulting in a priori assumptions of irrationality and unreliability such that their knowledge is often discounted or downgraded. The mental health service user/survivor movement is at the forefront of validating personal experience and narrative to secure a different ontological and epistemological basis for mental distress. A foundational strand of this is advocacy to enable people to give voice to their experience.The case of independent mental health advocacy (IMHA) services under mental health legislation in England, provides an opportunity to critically examine whether advocacy can promote epistemic justice as a result of the legally sanctioned encounter between clinical assessment and subjective experience, pivoting on judgements about risk. This paper draws on empirical data from a national evaluation of IMHA services, which included 90 individual interviews with people subject to detention and three focus groups with mental health service users. Fricker's concept of epistemic injustice is used as a lens to investigate how this type of advocacy might mitigate forms of epistemic injustice, and thereby promote greater social justice in mental health.The concept of epistemic injustice provides a valuable theoretical basis for understanding the worth of advocacy in addressing testimonial injustice as well as its relative weakness in overcoming hermeneutical injustice. The challenge of independent advocacy to the dominant discourse within mental health is considered and questions raised about the place of advocacy in modern democratic mental health systems.

Advocating for end-of-life choice at home: a survey of rural Australian nurses.

Rural healthcare resource limitations can affect the choices people make and their quality of life during its end stages. In rural regions of Australia, district nurses (DNs) working in generalist community roles provide access to care by visiting people in their homes. They may be well positioned to improve the quality of the end-of-life experience by advocating for choice and person-centred end-of-life goals; however, knowledge about care in this context is limited. Initial findings from an exploratory qualitative study describing how rural DNs are able to successfully advocate for the end-of-life choices and goals of people living at home need to be confirmed and further developed to inform clinical practice. This survey aimed to test and complement the findings from a narrative exploration of how DNs advocate successfully for the end-of-life goals of rural Australians. A sequential mixed methods study based on a pragmatic design was used to explore how DNs advocate successfully for the end-of-life goals of rural Australians. In the first phase of the study two stages of reflection on experience by rural DNs from the state of Victoria (N=7) provided written and in-depth narrative understandings of how advocacy is enabled and actioned in the practice context. The data were analysed with interpretive description, resulting in findings that could be used to inform a survey for the second phase. The survey, reported here, was designed as an online questionnaire to be distributed by email across inner and outer regional Australia. It was trialled by rural health professionals (N=13) and modified according to the advice received. The participation criteria for the survey specified registered nurses working in generalist community nursing roles with experience in providing successful end-of-life advocacy for people at home. Scales were used to test and complement the phase 1 findings and analysed using Cronbach's alpha and descriptive statistics, with a 95% confidence interval calculated. Open-ended questions added to complement the understanding of how successful advocacy is enabled and actioned in this context were analysed with descriptive interpretation. A self-selecting sample of nurses (N=91) responded to the survey between March and July 2015. The response came from most Australian states and territories, and confirmed the findings that willing nursing involvement in end-of-life experiences, specialised rural relational knowledge, and feeling supported, together enable nurses to advocate successfully for person-centred goals. Actions based on advocacy that were highly rated for success include holistic assessment, effective end-of-life communication and the organisation of empowering and supportive care, confirming the phase 1 findings. High levels of emotional intelligence, understandings of 'going beyond duty', the types of support used and the need for advocacy for resources were reported. The results provide both confirmatory and new knowledge that can be used with confidence to inform practice with a model for rural end-of-life nursing advocacy in the home setting.

Designing for diversity and designing for disability: New opportunities for libraries to expand their support and advocacy for people with disabilities

Libraries have a long history of support for and commitment to disabled people, far longer than most other public institutions in society. In some communities in North America, dedicated library services for disabled people have been provided without interruption for over a hundred years. As the social and political climate becomes, once again, increasingly difficult for and hostile to disabled people, libraries have the opportunity to bring more focus to disability in the design of their own programs and to expand their roles as advocates andallies of disabled people beyond the walls of the library. This article is written in the contextof the U.S. and focuses primarily on the current U.S. situation, though a few international examples are also used to illustrate key points. While the U.S. is the primary focus, the implications and relevance of many discussed issues will resonate with the global community and echo the concerns of disabled individuals and library and information science professionals in other countries.

Building Coalitions with NGOs: Religion Scholars and Disability Justice Activism

The World Council of Churches (WCC), an organization of 348 member churches, is a model of coalition building particularly through its support of individuals, churches, and their ministries for the inclusion, participation, and contributions of people with disabilities in its ecumenical work. The Ecumenical Disability Advocates Network (EDAN) informs one of the initiatives of the WCC—faith in Jesus Christ and communion fellowship—in the journey toward visible unity and justice for people who were too often missing the banquet of a church of all and for all. EDAN and other international disability advocates have most recently embedded its agenda of inclusion into the United Nations Sustainable Development Goals. The United Nations explicitly recognizes the Human Rights for persons with disabilities and, with the Convention of the Rights of Persons with Disabilities (2006), has raised protections against discrimination, exploitation, and abuse of people with disabilities to the level of international law. The World Health Organization works collaboratively in gathering data and local analyses of efforts to minimize preventable disability and maximize rehabilitation program availability with partners across the globe. These organizations, global in nature, have benefitted from the insights raised by people with disabilities and scholars working at the intersections of disability, religion, and justice. This essay examines the efficacy and opportunities of international coalitions available with these organizations so as to challenge the ethics of simple accommodations with a more robust social justice of affirmation and advocacy for people with disabilities: a new paradigm for our churches and our world.

Development of the Social Issues Advocacy Scale-2 (SIAS-2)

The 21-item Social Issues Advocacy Scale (SIAS; Nilsson, Marszalek et al. in Educ Psychol Meas 71(1):258–275, 2011) was developed as a concise measure of social justice advocacy for people in the helping and health professions. Recent scholarship has indicated a need for a broader measure. The present study seeks to continue development of the SIAS into an expanded version, the SIAS-2. A sample of 284 helping and health professionals and college students in related fields was administered 117 items, which was reduced to 78 items for the final instrument through item analysis and exploratory factor analysis. Eight factors emerged explaining 61.5% of the item variance. Corresponding subscales ranged in reliability from .88 to .94. Additional validity evidence is discussed.