Search results for: patient advocacy

Authors: Zuzana Durajova, Natasa Diatkova, Shreya Bhardwaj

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This paper introduces the project START, its activities, goals, evaluation and final results. Over the past few decades, the legal discourse surrounding mental health has resulted in improvement in patient rights (in Netherlands, etc.), the appointment of Ombudspersons for psychiatric patients (in Austria, Sweden) and facilitating the participation of patients in decision-making processes. Czech legislation already recognizes the position of “patient’s advocate” as a person of trust. However, this instrument is not very widely known and rarely used in practice. In the pilot study of the project, legal training for patient advocacy is provided to persons with experience with mental health problems/psychiatric hospitalization chosen from a Czech-based NGO. These persons (patient advocates) visit patients in involuntary hospitalization in one closed ward in the chosen psychiatric institution. During visits, the patient advocates inform patients about their legal standing, their procedural rights and also offer them individual support in contacting their counsel, family members etc. To understand the effect of the intervention, qualitative interviews and participant observations are conducted with the patients, advocates, the hospital management and staff and other identifiable stakeholders, such as government officials responsible for mental health care reform. The interviews are held before, during and after the intervention (support from patient advocates in hospitals). Given the ethical quandaries arising from using psychiatric wards as a field setting, we assume a participatory approach to ensure respect for patient boundaries and dignity. Through this project, we seek to establish a profession of patient advocates based on professional standards.

Keywords: patient advocacy, involuntary hospitalization, Czech Republic, patient Rights, professionalization

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Authors: Rachel S. Chang, Samuel P. Massion, Alan Z. Grusky, Heather A. Ridinger

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Introduction Health advocacy is defined as activities that improve access to care, utilize resources, address health disparities, and influence health policy. Advocacy is increasingly being recognized as a critical component of a physician’s role, as understanding social determinants of health and improving patient care are important aspects within the American Medical Association’s Health Systems Science framework. However, despite this growing prominence, educational interventions that address advocacy topics are limited and variable across medical school curricula. Furthermore, few recent studies have evaluated attitudes toward health advocacy among physicians-in-training in the United States. This study examines medical student attitudes towards health advocacy, along with perceived knowledge, ability, and current level of engagement with health advocacy during their clerkships. Methods This study employed a cross-sectional survey design using a single anonymous, self-report questionnaire to all second-year medical students at Vanderbilt University School of Medicine (n=96) in December 2020 during clerkship rotations. The survey had 27 items with 5-point Likert scale (15), multiple choice (11), and free response questions (1). Descriptive statistics and thematic analysis were utilized to analyze responses. The study was approved by the Vanderbilt University Institutional Review Board. Results There was an 88% response rate among second-year clerkship medical students. A majority (83%) agreed that formal training in health advocacy should be a mandatory part of the medical student curriculum Likewise, 83% of respondents felt that acting as a health advocate or patients should be part of their role as a clerkship student. However, a minority (25%) felt adequately prepared. While 72% of respondents felt able to identify a psychosocial need, 18% felt confident navigating the healthcare system and only 9% felt able to connect a patient to a psychosocial resource to fill that gap. 44% of respondents regularly contributed to conversations with their medical teams when discussing patients’ social needs, such as housing insecurity, financial insecurity, or legal needs. On average, respondents reported successfully connecting patients to psychosocial resources 1-2 times per 8-week clerkship block. Barriers to participating in health advocacy included perceived time constraints, lack of awareness of resources, lower emphasis among medical teams, and scarce involvement with social work teams. Conclusions In this single-institutional study, second-year medical students on clerkships recognize the importance of advocating for patients and support advocacy training within their medical school curriculum. However, their perceived lack of ability to navigate the healthcare system and connect patients to psychosocial resources, result in students feeling unprepared to advocate as effectively as they hoped during their clerkship rotations. Our results support the ongoing need to equip medical students with training and resources necessary for them to effectively act as advocates for patients.

Keywords: clerkships, medical students, patient advocacy, social medicine

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Authors: Tadesse Abera

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This study aimed to investigate the contribution of self-advocacy and engagement in the inclusion of SWDs in HEIs. A convergent parallel mixed methods design was employed. This article reports the quantitative strand. A total of 246 SWDs were selected through stratified proportionate random sampling technique from five public HEIs in Ethiopia. Data were collected through Self-advocacy questionnaire, student engagement scale, and college student experience questionnaire and analyzed through frequency, percentage, mean, standard deviation, correlation, one sample t-test and multiple regression. Both self-advocacy and engagement were found to have a predictive power on inclusion of respondents in the HEIs, where engagement was found to be more predictor. From the components of self-advocacy, knowledge of self and leadership and from engagement dimensions sense of belonging, cognitive, and valuing in their respective orders were found to have a stronger predictive power on the inclusion of respondents in the institutions. Based on the findings it was concluded that, if students with disabilities work hard to be self-determined, strive for realizing social justice, exert quality effort and seek active involvement, their inclusion in the institutions would be ensured.

Keywords: self-advocacy, engagement, inclusion, students with disabilities, higher education institution

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Authors: Sora Suh, Catherine Michener

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This paper examines the collaborative forms of advocacy that a group of four public school teachers took for their emergent bilingual students in one public school district. While teacher advocacy takes many forms in and out of the classroom, much advocacy work is done by individuals and less by collective action. As a result, individual teachers risk isolation or marginalization in their school contexts when they advocate for immigrant youth. This paper is intended to contribute to the documentation and understanding of teachers’ advocacy work as a collaborative act in teacher education research. The increase of ELs in US classrooms and a corresponding lack of teacher preparation to meet the needs of ELs has motivated the training of educators in linguistically responsive education (e.g., ESL, sheltered English instruction [SEI], bilingual education). Drawing from educational theories of linguistically responsive teaching for preparing educators, we trace the linguistically responsive advocacy work of the teachers. The paper is a multiple case study that tracks how teachers’ discussions on advocacy during a teacher preparation program leading to collaborative actions in their daily teaching lives in and out of school. Data collected includes online discussion forums on the topic of advocacy, course assignments on the topic of advocacy, video-audio recordings of classroom teaching observations, and video-audio recordings of individual and focus group interviews. The findings demonstrate that the teachers’ understanding of advocacy developed through collaborative partnerships formed in the teacher preparation program and grew into active forms of collaborative advocacy in their teaching practice in and out of school. The teachers formed multi-level and collaborative partnerships with teachers, families, community members, policymakers from the local government, and educational researchers to advocate for their emergent bilingual students by planning advocacy events such as new family orientations for emergent bilinguals, professional development for general education teachers on the topic of linguistically responsive instruction, and family nights hosted by the district. The paper’s findings present types of advocacy work in which teachers engage (pedagogical, curricular, out-of-school work) and provide evidence of collaborative advocacy work by a group of engaged educators. The paper highlights the increased agency and effective advocacy of teachers through teacher education and collaborative partnerships and suggests a need for more research on collaborative forms of teacher advocacy for emergent bilinguals.

Keywords: language education, teacher advocacy, language instruction, teacher education

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Authors: Tiffany Wicks

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Queer patients can face issues with self-advocating due to the factors of implicit provider bias, lack of tools and resources to self-advocate, and lack of comfortability in self-advocating based on prior experiences. In this study, five participants who identify as queer discussed their interactions with their healthcare providers. This exploratory study revealed that there is a need for healthcare provider education to reduce implicit bias and judgments about queer patients. There is also an important need for peer advocates in order to further inform healthcare promotion and decision-making before and during provider visits in an effort for a better outcome. Through this exploration, queer patients voiced their experiences and concerns to inform a need for change in healthcare collaboration between providers and patients in the queer community.

Keywords: queer, LGBT, patient, self-advocacy, healthcare

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Authors: Kasman, Darmawansyah, Alimin Maidin, Amran Razak

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Background: In decentralization, advocacy is needed to increase the health budget in Parepare District. One of the advocacy methods recommended by the World Bank is the economic loss approach. Methods: This research is observational in the field of health economics that contributes directly to the magnitude of the economic loss of the community and the government and provides advocacy to the executive and legislative to see the harm it causes. Results: The research results show the amount of direct cost, which consists of household expenditure for transport Rp.295,865,500. Indirect Cost of YLD of Rp.14.688.000, and YLL of Rp.28.986.336.00, so the amount of DALY is Rp.43.674.336.000. The total economic loss of Rp.43.970.201.500. These huge economic losses can be prevented by increasing the allocation of health budgets for promotive and preventive efforts and expanding the coverage of health insurance for the community. Conclusion: There is a need to advocate the executive and legislative about the importance of guarantee on public health financing by conducting studies in terms of economic losses so that all strategic alliances believe that health is an investment.

Keywords: advocacy, economic lost, health insurance, economic losses

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Authors: J.T. Chivanga

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This paper conceptualizes the significance of human rights activism by the Zimbabwean diaspora in the United Kingdom by analyzing how the diaspora advocates for the promotion of the rights of the people in Zimbabwe. It critiques the strategic essentialism theory that is used by the government of Zimbabwe as a basis to discredit the work of transnational advocacy groups. The research advances this position by articulating that the diaspora does not falsify nor simplify them to garner external support on the human rights situation in Zimbabwe. It establishes and shows the significance of transnational advocacy by articulating how the Zimbabwean diaspora addresses and brings to the attention of the international community human rights violations in Zimbabwe that would otherwise not have seen the light of day due to the absence of a conducive environment in that country that stifles the organization of protests under repressive laws such as the public order and security act of 2009.

Keywords: strategic essentialism, transnational advocacy, public order and security act, Zimbabwe diaspora

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Authors: Yirui Wang

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In the past few decades, patient safety has been the focus of much attention in the global medical and health field. As medical standards continue to improve and develop, the demand for patient safety is also growing. As one of the important dimensions in assessing patient safety, the Patient Perception Patient Safety Assessment Tool provides unique and valuable information from the patient's own perspective and plays an important role in promoting patient safety. This article aims to summarize and analyze the assessment content, assessment methods and applications of currently commonly used patient-perceived patient safety assessment tools at home and abroad, with a view to providing a reference for medical staff to select appropriate patient-perceived patient safety assessment tools.

Keywords: patients, patient safety, perception, assessment tools, review

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Authors: Jonathan Sahu, Jill Aylott

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Individuals with Autism, Intellectual and Developmental disabilities (AIDD) are one of the most vulnerable groups in society, hampered not only by their own limitations to understand and interact with the wider society, but also societal limitations in perception and understanding. Communication to express their needs and wishes is fundamental to enable such individuals to live and prosper in society. This research project was designed as an organisational case study, in a large secondary health care hospital within the National Health Service (NHS), to assess the quality of care provided to people with AIDD and to review the role of advocacy to reduce health inequalities in these individuals. Methods: The research methodology adopted was as an “insider researcher”. Data collection included both quantitative and qualitative data i.e. a mixed method approach. A semi-structured interview schedule was designed and used to obtain qualitative and quantitative primary data from a wide range of interdisciplinary frontline health care workers to assess their understanding and awareness of systems, processes and evidence based practice to offer a quality service to people with AIDD. Secondary data were obtained from sources within the organisation, in keeping with “Case Study” as a primary method, and organisational performance data were then compared against national benchmarking standards. Further data sources were accessed to help evaluate the effectiveness of different types of advocacy that were present in the organisation. This was gauged by measures of user and carer experience in the form of retrospective survey analysis, incidents and complaints. Results: Secondary data demonstrate near compliance of the Organisation with the current national benchmarking standard (Monitor Compliance Framework). However, primary data demonstrate poor knowledge of the Mental Capacity Act 2005, poor knowledge of organisational systems, processes and evidence based practice applied for people with AIDD. In addition there was poor knowledge and awareness of frontline health care workers of advocacy and advocacy schemes for this group. Conclusions: A significant amount of work needs to be undertaken to improve the quality of care delivered to individuals with AIDD. An operational strategy promoting the widespread dissemination of information may not be the best approach to deliver quality care and optimal patient experience and patient advocacy. In addition, a more robust set of standards, with appropriate metrics, needs to be developed to assess organisational performance which will stand the test of professional and public scrutiny.

Keywords: advocacy, autism, health inequalities, intellectual developmental disabilities, quality of care

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Authors: Tengku Ezni Balqiah, Fanny Martdianty, Rifelly Dewi Astuti, Mutia Nurazizah Rachmawati

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The Corona Disease 2019 (COVID-19) pandemic has changed the world considerably and has disrupted businesses and people’s lives globally. In response to the pandemic, businesses have seen increased demand for corporate social responsibility (CSR). Businesses can increase their investments in CSR initiatives during the pandemic through various actions. This study examines how the various motives of philanthropy CSR influence perceived quality of life, company image, and advocacy. This study employed surveys of 719 respondents from seven provinces in Indonesia that had the highest number of COVID-19 cases in the country. A structural equation model was used to test the hypothesis. The results showed that value and strategic motives positively influenced the perceived quality of life and corporate image, while the egoistic motive was negatively associated with both the perceived quality of life and the image of the company. The study also suggested that advocacy was strongly related to the perceived quality of life instead of a corporate image. The results indicate that, during a pandemic, both public- (i.e. value) and firm-serving (i.e. strategic) motives can have the same impact as long as people perceive that the businesses are sincere.

Keywords: advocacy, COVID 19, CSR motive, Indonesia, quality of life

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Authors: Denise F. Brown

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This proposal provides an explanation of the content for a Special Topics Course to be offered Spring of 2022. The course will be titled, Creative means to address mental health in the African American Community: Arts, Advocacy, and Awareness. Research shows that African Americans are less likely to seek treatment for mental illnesses. The stigma around mental illness influences negative ideas about having psychological problems within the African American community. Assessments of how African Americans perceive mental illness will also be provided. Current research suggests that understanding mental health is just as important as understanding mental illness. The distinguishment between mental illness and mental health provides a way to not negatively point out mental illness but to better understand that psychological and emotional well-being can be achieved whether a mental illness is present or not. The course will consist of defining mental health and mental illness and then what it means to utilize creative means to become a mental health advocate within the African American community.

Keywords: arts, advocacy, black mental health, mental illness

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Authors: Dr. Rebecca Kimelman

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Teaching students to self-advocate has become a central topic in special education literature and practice. However, many special education programs do not address this important skill area. To this end, I created and implemented the Self Advocacy Made Easy (S.A.M.E.) program of instruction, intended to enhance the self-advocacy skills of young adults with mild to moderate disabilities. The effectiveness of S.A.M.E., the degree to which self-advocacy skills were acquired and demonstrated by the students, the level of parental support, and the impact of culture on the process, and teachers’ beliefs and attitudes about the role of self-advocacy skills for their students were measured using action research that employed mixed methodology. Conducted at an overseas American International School, this action research study sought answers to these questions by providing an in-depth portrayal of the S.A.M.E. program, as well as the attitudes and perceptions of the stakeholders involved in the study (thirteen students, their parents, teachers and counsellors). The findings of this study were very positive. The S.A.M.E. program was found to be a valid and valuable instructional tool for teaching self-advocacy skills to students with learning disabilities and ADHD. The study showed participation in the S.A.M.E. program led to an increased understanding of the important elements of self-advocacy, an increase in students’ skills and abilities to self-advocate, and a positive increase in students’ feelings about themselves. Inclusion in the Student-Led IEP meetings, an authentic student assessment within the S.A.M.E. program, also yielded encouraging results, including a higher level of ownership of one’s profile and learning needs, a higher level of student engagement and participation in the IEP meeting, and a growing student awareness of the relevance of the document and the IEP process to their lives. Without exception, every parent believed that participating in the Student-Led IEP led to a growth in confidence in their children, including that it taught them how to ‘own’ their disability and an improvement in their communication skills. Teachers and counsellors that participated in the study felt the program was worthwhile, and led to an increase in the students’ ability to acknowledge their learning profile and to identify and request the accommodations (such as extended time or use of a calculator) they need to overcome or work around their disability. The implications for further research are many, and include an examination of the degree to which participation in S.A.M.E. fosters student achievement, the long-term effects of participation in the program, and the degree to which student participation in the Student-Led IEP meeting increases parents’ level of understanding and involvement.

Keywords: self-advocacy, learning disabilities, ADHD, student-led IEP process

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Authors: Paulina Clara Appiah, Kofi Issah, Timothy Letsa, Kennedy Nartey, Amanua Chinbuah, Adoma Dwomo-Fokuo, Jacqeline G. Asibey

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Background: The Every Newborn Action Plan provides evidence–based interventions to end preventable deaths in high burden countries. Brong Ahafo Region is one of ten regions in Ghana with less than half of its district hospitals having sick newborn units. Facility-based neonatal care is not prioritized and under-funded, and there is also inadequate knowledge and competence to manage the sick. The aim of this intervention was to make available in–patient care for sick newborns in all 19 district hospitals through the strengthening of facility-based systems. Methods: With the development and dissemination of the National Newborn Strategy and Action Plan 2014-2018, the country was able to attract PATH which provided the region with basic resuscitation equipment, supported hospital providers’ capacity building in Helping Babies Breathe, Essential Care of Every Baby, Infection Prevention and Management and held a symposia on managing the sick newborn. Newborn advocacy was promoted through newborn champions at the facility and community levels. Hospital management was then able to mobilize resources from communities, corporate organizations and from internally generated funds; created or expanded sick newborn care units and provided essential medicines and equipment. Kangaroo Mother Care was initiated in 6 hospitals. Pediatric specialist outreach services initiated comprised telephone consultations, teaching ward rounds and participating in perinatal death audits meetings. Newborn data capture and management was improved through the provision and training on the use of standard registers provided from the national level. Results: From February 2015 to November 2017, hospitals with sick newborn units increased from 7 to 19 (37%-100%). 180 pieces each of newborn ventilation bags and masks size 0, 1 and penguin suction bulbs were distributed to the hospitals, in addition to 20 newborn mannequin sets and 90 small clinical reminder posters. 802 providers (96.9%) were trained in resuscitation, of which 96% were successfully followed up in 6 weeks, 91% in 6 months and 80% in 12 months post-training. 53 clinicians (65%) were trained and mentored to manage sick newborns. 56 specialist teaching ward rounds were conducted. Data completeness improved from 92.6% - 99.9%. Availability of essential medicines improved from 11% to 100%. Number of hospital cots increased from 116 to 248 (214%). Cot occupancy rate increased from 57.4% to 92.5%. Hospitals with phototherapy equipment increased from 0 to 12 (63%). Hospitals with incubators increased from 1 to 12 (5%-63%). Newborn deaths among admissions reduced from 6.3% to 5.4%. Conclusion: Access to in-patient care increased significantly. Newborn advocacy successfully mobilized resources required for strengthening facility –based systems.

Keywords: facility-based systems, Ghana, in-patient care, newborn advocacy

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Authors: Megumi Yamasaki, Eiko Shimizu

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The term academic advisor system first appeared in 2012 in Japan. After ten years, it is not yet functioning. One of Japanese college students’ characteristics is that they choose an institution but may not be interested in a major and want to earn a degree for a career. When the university encourages students to develop competencies as well as students to set personal goals during college life, it is critical to support students develop self-directed attitudes and advocacy skills. This paper will analyze the students’ current stage and how academic advising supports their development.

Keywords: academic advising, student development, self-directed, self-advocacy

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Authors: Chun Chen Yea, Wen Huei Chou

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Many chemical changes in the atmosphere and the ocean are invisible to the naked eye, but they have profound impacts. These changes not only confirm the phenomenon of global carbon pollution, but also forewarn that more changes are coming. The carbon dioxide gases emitted from the burning of fossil fuels dissolve into the ocean and chemically react with seawater to form carbonic acid, which increases the acidity of the originally alkaline seawater. This gradual acidification is occurring at an unprecedented rate and will affect the effective formation of carapace of some marine organisms such as corals and crustaceans, which are almost entirely composed of calcium carbonate. The carapace of these organisms will become more dissoluble. Acidified seawater not only threatens the survival of marine life, but also negatively impacts the global ecosystem via the food chain. Faced with the threat of ocean acidification, all humans are duty-bound. The industrial sector outputs the highest level of carbon dioxide emissions in Taiwan, and the petrochemical industry is the major contributor. Ever since the construction of Formosa Plastics Group's No. 6 Naphtha Cracker Plant in Yunlin County, there have been many environmental concerns such as air pollution and carbon dioxide emission. The marine life along the coast of Yunlin is directly affected by ocean acidification arising from the carbon emissions. Societal change demands our willingness to act, which is what social advocacy promotes. This study uses digital storytelling for social advocacy and ocean acidification as the subject of a visual narrative in visualization to demonstrate the subsequent promotion of social advocacy. Storytelling can transform dull knowledge into an engaging narrative of the crisis faced by marine life. Digital dissemination is an effective social-work practice. The visualization promoting awareness on ocean acidification disseminated via social media platforms, such as Facebook and Instagram. Social media enables users to compose their own messages and share information across different platforms, which helps disseminate the core message of social advocacy.

Keywords: digital storytelling, visualization, ocean acidification, social advocacy

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Authors: John Acord, Ankita Batla, Kiran Khepar, Maude Schmidt, Charlotte Allen, Russ Bradford

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Objectives: Despite the availability oftreatment options, Parkinson’s disease (PD) continues to impact heavily on a patient’s quality of life (QoL), as many symptoms that bother the patient remain unexplored and untreated in clinical settings. The aims of this research were to understand the burden of PDsymptoms from a patient perspective, particularly those which are the most persistent and debilitating, and to determine if current treatments and treatment algorithms adequately focus on their resolution. Methods: A13-question, online, patient-reported survey was created based on the MDS-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS)and symptoms listed on Parkinson’s Disease Patient Advocacy Groups websites, and then validated by 10 Parkinson’s patients. In the survey, patients were asked to choose both their most common and their most bothersome symptoms, whether they had received treatment for those and, if so, had it been effective in resolving those symptoms. Results: The most bothersome symptoms reported by the 111 participants who completed the survey were sleep problems (61%), feeling tired (56%), slowness of movements (54%), and pain in some parts of the body (49%). However, while 86% of patients reported receiving dopamine or dopamine like drugs to treat their PD, far fewer reported receiving targeted therapies for additional symptoms. For example, of the patients who reported having sleep problems, only 33% received some form of treatment for this symptom. This was also true for feeling tired (30% received treatment for this symptom), slowness of movements (62% received treatment for this symptom), and pain in some parts of the body (61% received treatment for this symptom). Additionally, 65% of patients reported that the symptoms they experienced were not adequately controlled by the treatments they received, and 9% reported that their current treatments had no effect on their symptoms whatsoever. Conclusion: The survey outcomes highlight that the majority of patients involved in the study received treatment focused on their disease, however, symptom-based treatments were less well represented. Consequently, patient-reported symptoms such as sleep problems and feeling tired tended to receive more fragmented intervention than ‘classical’ PD symptoms, such as slowness of movement, even though they were reported as being amongst the most bothersome symptoms for patients. This research highlights the need to explore symptom burden from the patient’s perspective and offer Customised treatment/support for both motor and non-motor symptoms maximize patients’ quality of life.

Keywords: survey, patient reported symptom burden, unmet needs, parkinson's disease

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Authors: Asinguza P. Allan

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The Advocacy for Better Health aims to equip citizens with enabling environment and systems to effectively advocate for strong action plans to improve health services. This is because the 2020 Government target for Uganda to transform into a middle income country will be achieved if investment is made in keeping the population healthy and productive. Citizen participation as an important foundation for change has been emphasized to gather data through participatory rural appraisal and inform evidence-based advocacy for recruitment and motivation of human resources. Citizens conduct problem ranking during advocacy forums on staffing levels and health worker absenteeism. Citizens prioritised inadequate number of midwives and absenteeism. On triangulation, health worker to population ratio in Uganda remains at 0.25/1,000 which is far below the World Health Organization (WHO) threshold of 2.3/1,000. Working with IntraHealth, the project advocated for recruitment of critical skilled staff (doctors and midwives) and scale up health workers motivation strategy to reduce Uganda’s Neonatal Mortality Rate of 22/1,000 and Maternal Mortality Ratio of 320/100,000. Government has committed to increase staffing to 80% by 2018 (10 districts have passed ordinances and revived use of duty rosters to address health worker absenteeism. On the other hand, the better health advocacy debate has been elevated with need to increase health sector budget allocations from 8% to 10%. The project has learnt that building a body of evidence from citizens enhances the advocacy agenda. Communities will further monitor government commitments to reduce Neonatal Mortality Rate and Maternal Mortality Ratio. The project has learnt that interface meeting between duty bearers and the community allows for immediate feedback and the process is a strong instrument for empowerment. It facilitates monitoring and performance evaluation of services, projects and government administrative units (like district assemblies) by the community members themselves. This, in turn, makes the human resources in health to be accountable, transparent and responsive to communities where they work. This, in turn, promotes human resource performance.

Keywords: advocacy, empowerment, evidence, human resources

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Authors: Hardi Alunaza, Mauidhotu Rofiq

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This research is attempted to describe the role of KontraS as track-6 on multi track diplomacy for conflict resolution in Myanmar in 2015. The researcher took the specific interest on multi track diplomacy and transnational advocacy concepts to analyze the phenomena. Furthermore, this essay is using the descriptive method with a qualitative approach. The data collection technique is literature study consisting of books, journals, and including data from the reliable website in supporting the explanation of this research. The result of this research is divided into two important points in explaining the role of KontraS in cases of human rights crisis in Myanmar. First, KontraS as human rights NGO in Indonesia was able to advocate against human rights violence that occurred in other countries by encouraging Indonesian Government to take part in the resolution of human rights issues affecting the Rohingya people in Burma. Also, KontraS take advantages of transnational advocacy networks as a form of politics and accountabilities responsibility of Non-Governmental Organization against human rights crisis in other countries.

Keywords: conflict resolution, human rights crisis, multi track diplomacy, transnational advocacy

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Authors: Guilherme Ribeiro, Alexandre Oliveira, Antonio Ferreira, Shyam Visweswaran, Gregory Cooper

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Patient-specific models are instance-based learning algorithms that take advantage of the particular features of the patient case at hand to predict an outcome. We introduce two patient-specific algorithms based on decision tree paradigm that use AUC as a metric to select an attribute. We apply the patient specific algorithms to predict outcomes in several datasets, including medical datasets. Compared to the patient-specific decision path (PSDP) entropy-based and CART methods, the AUC-based patient-specific decision path models performed equivalently on area under the ROC curve (AUC). Our results provide support for patient-specific methods being a promising approach for making clinical predictions.

Keywords: approach instance-based, area under the ROC curve, patient-specific decision path, clinical predictions

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Authors: Gamith Mendis

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Even though the doctors are knowledgeable, there's a gap between knowing and being ethical. This is a barrier to establish an ethical doctor-patient relationship. Current health system has oriented in a way that gives a meaning to both the doctor and the patient through intermediate entities. For the doctor, the meaning of the doctor-patient relationship is given through the financial benefits, promotions, and social status. For the patient, the meaning is given through curing of the disease. It is obvious that both are independent entities between the doctor and the patient. As the philosophers like Husserl and Heidegger have pointed out, our subjective world will give the immediate meaningfulness to us. We should seek this immediate meaningfulness of the doctor-patient relationship. The present research has used the existential methodology as guided self-reflections on the lived experiences of a doctor and his students. In this approach, two important aspects have been understood. The first is, establishing the fact that being ethical is itself giving meaningfulness to the doctor’s being without any mediate entities. Simply, it is enjoying being an honest being. The second is by being-with-the-patient while treating the disease; both the doctor and the patient can enjoy the meaningfulness of their human relationship. The medical students and the doctors should focus on this meaningfulness. For that, this discussion should be actively incorporated into the medical curriculum with programs of practical guidance to medical students and should be discussed in patient-care reviews in the health setting within a satisfactory framework.

Keywords: doctor-patient relationship, medical education, medical ethics, medical humanities, qualitative health research

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Authors: Wan Nur'ashiqin Wan Mohamad, Zarina Othman, Mohd Azman Abas, Azizah Ya'acob, Rozmel Abdul Latiff

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Effective doctor-patient interaction is vital to both doctor and patient relationship. It is the cornerstone of good practice and an integral quality of a healthcare institution. This paper presented the hierarchy of the communication elements in doctor-patient interaction during medical consultations in a medical centre in Malaysia. This study adapted The Picker Patient Experience Questionnaire (2002) to obtain the information from patients. The questionnaire survey was responded by 100 patients between the ages of 20 and 50. Data collected were analysed using Rasch Measurement Model to yield the hierarchy of the communication elements in doctor-patient interaction. The findings showed that the three highest ranking on the doctor-patient interaction were doctor’s treatment, important information delivery and patient satisfaction of doctor’s responses. The results are valuable in developing the framework for communication ethics of doctors.

Keywords: communication elements, doctor-patient interaction, hierarchy, Rasch measurement model

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Authors: Leslie Beale

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Being a patient with a chronic disease is both a physical and emotional experience. The ability to recognize a patient’s emotional health is an important part of a health care provider’s skills. For the purposes of this paper, emotional health is viewed as the way that we feel, and the way that our feelings affect us. Understanding the patient’s emotional health leads to improved provider-patient relationships and health outcomes. For example, when a patient first hears his or her diagnosis from a provider, they might find it difficult to cope with their emotions. Struggling to cope with emotions interferes with the patient’s ability to read, understand, and act on health information and services. As a result, the patient becomes more frustrated and confused, creating barriers to accessing healthcare services. These barriers are challenging for both the patient and their healthcare providers. There are five basic emotions that are part of who we are and are always with us: fear, anger, sadness, joy, and compassion. Living with a chronic disease however can cause a patient to experience and express these emotions in new and unique ways. Within the provider-patient relationship, there needs to be an understanding that each patient experiences these five emotions and, experiences them at different times. In response to this need, the paper highlights a health promotion framework for patients with chronic disease. This framework emphasizes the emotional health of patients.

Keywords: health promotion, emotional health, patients with chronic disease, patient-centered care

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Authors: Tasha L. Golden

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Girls in the U.S. juvenile justice system are most often arrested for truancy, drug use, or running from home, all of which are symptoms of abuse. In fact, some have called this 'The Sexual Abuse to Prison Pipeline.' Such abuse has consequences for girls' health, education, employment, and parenting, often resulting in significant health disparities. Yet when arrested, girls rarely encounter services designed to meet their unique needs. Instead, they are expected to cope with a system that was historically designed for males. In fact, even literature advocating for increased gender equity frequently fails to include girls’ voices and firsthand accounts. In response to these combined injustices, public health researchers launched a trauma-informed creative writing intervention in a southern juvenile detention facility. The program was designed to improve the health of detained girls, while also establishing innovative methods of both data collection and social justice advocacy. Girls’ poems and letters were collected and coded, adding rich qualitative data to traditional survey responses. In addition, as part of the intervention, these poems are regularly published by international literary publisher Sarabande Books—and distributed to judges, city leaders, attorneys, state representatives, and more. By utilizing a creative medium, girls generated substantial civic engagement with their concerns—thus expanding their influence and improving policy advocacy efforts. Researchers hypothesized that having access to their communities and policy makers would provide its own health benefits for incarcerated girls: cultivating self-esteem, locus of control, and a sense of leadership. This paper discusses the establishment of this intervention, examines findings from its evaluation, and includes several girls’ poems as exemplars. Grounded in social science regarding expressive writing, stigma, muted group theory, and health promotion, the paper theorizes about the application of arts-based advocacy efforts to other social justice endeavors.

Keywords: advocacy, public health, social justice, women’s health

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Authors: Emily Hickmann, Peggy Richter, Maren Kaehlig, Hannes Schlieter

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Patient engagement is a cornerstone of high-quality care and essential for patients with chronic diseases to achieve improved health outcomes. Through digital transformation, possibilities to engage patients in their personal healthcare have multiplied. However, the exploitation of this potential is still lagging. To support the transmission of patient engagement theory into practice, this paper’s objective is to give a state-of-the-art overview of patient engagement tools and methods. A systematic literature review was conducted. Overall, 56 tools and methods were extracted and synthesized according to the four attributes of patient engagement, i.e., personalization, access, commitment, and therapeutic alliance. The results are discussed in terms of their potential to be implemented in digital health solutions under consideration of the “computers are social actors” (CASA) paradigm. It is concluded that digital health can catalyze patient engagement in practice, and a broad future research agenda is formulated.

Keywords: chronic diseases, digitalization, patient-centeredness, patient empowerment, patient engagement

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Authors: Agi Sunday

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A descriptive analysis of reported cases of sickle cell disease and the level of awareness about genetic counselling in 30 hospitals were carried out. Additionally, 150 individuals between ages 16-45 were randomly selected for evaluation of genetic counselling awareness. The main tools for this study were questionnaires which were taken to hospitals, and individuals completed the others. The numbers of reported cases of sickle cell disease recorded in private, public and teaching hospitals were 14 and 57; 143 and 89; 272 and 57 for the periods of 1995-2000 and 2001-2005, respectively. A general informal genetic counselling took place mostly in the hospitals visited. 122 (86%) individuals had the knowledge of genetic disease and only 43 (30.3%) individuals have been exposed to genetic counselling. 64% of individuals agreed that genetic counselling would help in the prevention of genetic disease.

Keywords: sickle disease, genetic counseling, genetic testing, advocacy

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Authors: Hye-Kyung Kang

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Social justice is a central principle of the social work profession and education. However, scholars have long questioned the profession’s commitment to putting social justice values into practice. Clinical social work has been particularly criticized for its lack of attention to social justice and for failing to address the concerns of the oppressed. One prominent criticism of clinical social work is that it often relies on individual intervention and fails to take on system-level changes or advocacy. This concern evokes the historical macro-micro tension of the social work profession where micro (e.g., mental health counseling) and macro (e.g., policy advocacy) practices are conceptualized as separate domains, creating a false binary for social workers. One contributor to this false binary seems to be that most clinical practice models do not prepare social work students and practitioners to make a clear link between clinical practice and social justice. This paper presents a model of clinical social work practice that clearly recognizes the essential and necessary connection between social justice, advocacy, and clinical practice throughout the clinical process: engagement, assessment, intervention, and evaluation. Contemporary relational theories, critical social work frameworks, and anti-oppressive practice approaches are integrated to build a clinical social work practice model that addresses the urgent need for mental health practice that not only helps and heals the person but also challenges societal oppressions and aims to change them. The application of the model is presented through case vignettes.

Keywords: social justice, clinical social work, clinical social work model, integrative model

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Authors: Bhavneet Bharti, Prahbhjot Malhi, Vandana Thakur

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Introduction: Children of the urban migrant laborers have great difficulty in accessing government programs which are otherwise routinely available in rural settings. These include programs for child care, nutrition, health and education. There are major communicative fault-lines preventing advocacy for these marginalized children. The overarching aim of this study was to investigate the role of an innovative strategy of children’s drawings in supporting communication between children, social workers, pediatricians and other child advocates to fulfil their fundamental child rights. Materials and Methods: The data was collected over a period of one-year April 2015 to April 2016 during the routine visits by the members of the Social Pediatrics team including a social worker, pediatricians and an artist to the makeshift colony of migrant laborers. Once a week a drawing session was organized where the children including adolescents were asked to any drawing and provide a narrative thereafter. 5-30 children attended these weekly sessions for one year. All these drawings were then classified into various themes and exhibited on 16th April 2016 in the Govt. College of Art Museum. The forum was used for advocacy of Child Rights of these underprivileged children to Secretary social welfare. Results: Mean (SD) age of children in present observational study was 8.5 (2.5) years, with 60% of the boys. Majority of children demonstrated themes which were local and contextualized to their daily needs, threats and festivals which clearly underscored their fundamental right to basic services and equality of opportunities to achieve their full development Drawings of tap with flowing water, queues of people collecting water from hand pumps reflect the local problem of water availability for these children. Young children talking about fear of rape and murder following their drawings indicate the looming threat of potential abuse and neglect. Besides reality driven drawing, children also echoed supernatural beliefs, dangers and festivities in their drawings. Anyone who watched these children at work with art materials was able to see the intense level of absorption, clearly indicating the enjoyment they received, making it a meaningful activity. Indeed, this self-advocacy through art exhibition led to the successful establishment of mobile Anganwadi (A social safety net programme of the government) in their area of stay. Conclusions: This observational study is an example of how children were able to do self-advocacy to protect their rights. Of particular importance, these drawings address how psychologists and other child advocates can ensure in a child-centered manner that the voice of children is heard and represented in all assessments of their well-being and future care options.

Keywords: child advocacy, children drawings, child rights, marginalized children

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Authors: Amira A. Alshowkan, Aleya M. Gamal

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Background: Patient safety is a vital element in providing high quality health care. In psychiatric wards, numerous of physical and emotional factors have been found to affect patient safety. In addition, organization, healthcare provider and patients were identified to be significant factors in patient safety. Aim: This study aims to discover nurses' perception of patient safety in psychiatric wards in Saudi Arabian. Method: Date will be collected through semi-structure face to face interview with nurses who are working at psychiatric wards. Data will be analysed thought the used of thematic analysis. Results: The results of this study will help in understanding the psychiatric nurses' perception of patient safety in Saudi Arabia. Several suggestions will be recommended for formulation of policies and strategies for psychiatric wards. In addition, recommendation to nursing education and training will be tailored in order to improve patient safety culture.

Keywords: patient safety culture, psychiatric, qualitative, Saudi Arabia

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Authors: Sadhana Sharma, Neha Sharma, Hardik Khandelwal, Arti Sharma

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Background: It is widely acknowledged globally that parents must advocate for their children's drug and substance abuse prevention. However, many parents find it difficult to advocate due to systemic and logistical barriers. Alternatives to introducing advocacy, awareness, and support for the prevention of drug and substance abuse to children could occur in schools. However, little research has been conducted on the development of advocates for substance abuse in school settings. Objective: to evaluate the effectiveness of a school-based addiction prevention and control created as part of the Rajasthan Addiction Prevention Project (a partnership between state-community initiative). Methods: We conducted an evaluation in this study to determine the impact of a RAPP on a primary outcome (substance abuse knowledge) and other outcomes (family–school partnership, empowerment, and support). Specifically, between September-December 2022, two schools participated in the intervention group (advocacy training), and two schools participated in the control group (waiting list). The RAPP designed specialised 2-hrs training to equip teachers-parents with the knowledge and skills necessary to advocate for their own children and those of other families. All participants were required to complete a pre- and post-survey. Results: The intervention group established school advocates in schools where trained parents volunteered to lead support groups for high-risk children. Compared to the participants in the wait list control group, those in the intervention group demonstrated greater education knowledge, P = 0.002, and self-mastery, P = 0.04, and decreased family–school partnership quality, P = 0.002.Conclusions: The experimental evaluation of school-based advocacy programme revealed positive effects on substance abuse that persist over time. The approach wa s deemed feasible and acceptable by both parents and the school.

Keywords: prevention, school based, addiction, advocacy

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Authors: Denise F. Brown, Melina McConatha

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African Americans utilizing the art of vocal expressions, particularly for self-expression, has been a historical avenue of advocating for social justice and human rights. Vocal expressions can take many forms, such as singing, poetry, storytelling, and acting. Many well-known artists, politicians, leaders, and teachers used their voices to promote the causes and concerns of the African American community as well as the expression of their own experiences of being 'black' in America. The purpose of this project was to evaluate the perceptions of African American students in utilizing their voices for self-awareness, interview skills, and social change after attending a three-part workshop on vocal advocacy. This research utilized the framework of black feminism to understand empowerment in advocacy and self-expression. Students participated in learning about the power of their voices, and what purpose presence, and passion they discovered through the Immersive Voice workshop. There were three areas covered in the workshop. The first area was the power of the voice, the second area was the application of vocal passion, and the third area was applying the vocal power to express personal interest, interests of advocating for others, and confidence and speaking to others to further careers, i.e., using vocal power for job interviewing skills. The students were instructed to prepare for the workshops by completing a pre-workshop open-ended survey. There were a total of 15 students that participated. After the workshop ended, the students were instructed to complete a post-workshop survey. The surveys were assessed by evaluating both themes and codes from student's written feedback. From the pre-workshop survey, students were given a survey for them to provide feedback regarding the power of voice prior to participating in the workshops. From the student's responses, the theme (advocating for self and others) emerged as it related to student's feedback on what it means to advocate. There were three codes that led to the theme, having knowledge about advocating for self and others, gaining knowledge to advocate for self and others, and using that knowledge to advocate for self and others. After the students completed participation in the workshops, a post workshop- survey was given to the students. Students' feedback was assessed, and the same theme emerged, 'advocating for self and others.' The codes related to the theme, however, were different and included using vocal power (a term students learned during the workshop) to represent self, represent others, and obtain a job/career. In conclusion, the results of the survey showed that students still perceived advocating as speaking up for themselves and other people. After the workshop, students still continued to associate advocacy with helping themselves and helping others but were able to be more specific about how the sound of their voice could help in advocating, and how they could use their voice to represent themselves in getting a job or starting a career.

Keywords: advocacy, command, self-expression, voice

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