Are Perioperative Nurses Really Patient Advocates?

2003 ◽  
Vol 13 (1) ◽  
pp. 24-28 ◽  
Author(s):  
Jane Farrell
Keyword(s):  
Perioperative Nurses ◽  
Patient Advocate ◽  
Patient Advocates

The debate regarding the nurse as patient advocate continues to evoke strong feelings. This article will explore the concept of advocacy, where the notion originated, the qualities needed to be a patient advocate and whether nurses in the perioperative environment do advocate for their patients.

Hospice volunteer as patient advocate: A trait approach

2010 ◽  
Vol 8 (2) ◽  
pp. 159-167 ◽  
Author(s):  
Carol A. Savery ◽  
Nichole Egbert
Keyword(s):  
Locus Of Control ◽  
Patient Advocacy ◽  
Patient Rights ◽  
Patient Centered ◽  
Internal Locus ◽  
Internal Locus Of Control ◽  
Patient Advocate ◽  
Hospice Volunteers ◽  
Patient Advocates ◽  
Additional Support

AbstractObjective:The purpose of this study is to examine traits of hospice volunteers that facilitate their success in this informal caregiving role, with the larger goal of alleviating the family caregiver burden and providing additional support to the hospice patient. To achieve this goal, a new scale was developed to tap into how hospice volunteers view their patient advocacy role.Method:Participants were 136 trained hospice volunteers from the Midwest who had direct contact with hospice patients. Volunteers mailed anonymous surveys that included measures of argumentativeness, locus of control, attitudes toward patient advocacy, and key demographic items. A new scale was developed to measure patient advocacy by hospice volunteers called the Hospice Volunteer as Patient Advocate.Results:Submitting this scale to exploratory factor analysis, two factors emerged: duty as patient advocate and support of patient rights. After performing a multiple regression analysis, results showed that female volunteers who were high in internal locus of control were more likely to perceive that volunteers have a duty as patient advocates. Younger volunteers with more years of volunteer experience, higher levels of internal locus of control, and lower external locus of control were more likely to support patient rights.Significance of results:The findings of this study could be used to formalize hospice volunteers' role as patient advocates, thus better utilizing them as committed, caring communicators and improving patient-centered care at end-of-life.

Legislating for advocacy: The case of whistleblowing

2015 ◽  
Vol 24 (3) ◽  
pp. 305-312 ◽  
Author(s):  
Chanel L Watson ◽  
Tom O’Connor
Keyword(s):  
United Kingdom ◽  
Patient Advocate ◽  
The United Kingdom ◽  
Patient Advocates ◽  
The Subject

Background: The role of nurses as patient advocates is one which is well recognised, supported and the subject of a broad body of literature. One of the key impediments to the role of the nurse as patient advocate is the lack of support and legislative frameworks. Within a broad range of activities constituting advocacy, whistleblowing is currently the subject of much discussion in the light of the Mid Staffordshire inquiry in the United Kingdom (UK) and other instances of patient mistreatment. As a result steps to amend existing whistleblowing legislation where it exists or introduce it where it does not are underway. Objective: This paper traces the development of legislation for advocacy. Conclusion: The authors argue that while any legislation supporting advocacy is welcome, legislation on its own will not encourage or enable nurses to whistleblow.

Bedside rationing in cancer care: Patient advocate perspective

2021 ◽  
pp. 147775092110704
Author(s):  
Ornella Gonzato
Keyword(s):  
Cultural Change ◽  
Cancer Care ◽  
Care Patient ◽  
Public Attention ◽  
Patient Advocate ◽  
Number Of Patients ◽  
Open Debate ◽  
Patient Advocates ◽  
Decision Making Processes ◽  
Healthcare Rationing

Rationing in healthcare remains very much a taboo topic. Before COVID-19, it rarely received public attention, even when it occurred in everyday practices, mainly in the form of implicit rationing, as it continues to do today. There are different definitions, types and levels of healthcare rationing, according to different perspectives. With the aim of contributing to a more coherent debate on such a highly emotional healthcare issue as rationing, here are provided a number of reflections from a patient advocate perspective which are specifically focused on bedside rationing, the most troublesome level, both for patients and clinicians, particularly in regard to cancer care. Oncology, with its numerous expensive therapies and increasing number of patients, is undeniably one of the main areas contributing to the increase in healthcare costs. However, the fixed budgets of today's publicly financed health systems cannot allow unlimited access to the potentially beneficial treatments to all patients. Bedside rationing constitutes the last phase of many decision-making processes occurring at different interrelated levels (macro-levels), both inside and outside healthcare systems, which implicitly and inevitably result in a bottleneck determined by the upstream decisions themselves. Shifting from implicit to explicit bedside rationing essentially means moving from a paternalistic to a citizen-before-patient approach; this implies, first of all, a cultural change. Practical bedside rationing is an ethically complex topic, but one that needs to be urgently addressed in a transparent and open debate. In this scenario, the oncological community – patients, patient advocates and clinicians – can and should play an important role.

Undertaking the Role of Patient Advocate: a longitudinal study of nursing students

2003 ◽  
Vol 10 (5) ◽  
pp. 462-471 ◽  
Author(s):  
Insaf Altun ◽  
Nermin Ersoy
Keyword(s):  
Nursing Education ◽  
Longitudinal Study ◽  
Nursing Students ◽  
Student Nurses ◽  
Codes Of Ethics ◽  
School Of Nursing ◽  
Patient Advocate ◽  
Patient Advocates ◽  
Right To Refuse Treatment ◽  
The Right

Patient advocacy has been claimed as a new role for professional nurses and many codes of ethics for nurses state that they act as patient advocates. Nursing education is faced with the challenge of preparing nurses for this role. In this article we describe the results of a study that considered the tendencies of a cohort of nursing students at the Kocaeli University School of Nursing to act as advocates and to respect patients’ rights, and how their capacities to do so changed (or not) as a result of their nursing education. This longitudinal study used a questionnaire consisting of 10 statements relating to patient care. It was performed both at the start (1998) and at the end (2002) of the nursing training. At the beginning of their course 77 students participated; in the study. After four years, only 55 students participated, the reason for this drop in number being unknown. The questions asked nurses if patients should have: the right to receive health care; the right to participate in the decision-making process about their treatment; the right always to be told the truth; and the right to have access to their own medical records. They were also asked: if quality of life should be a criterion for discontinuing treatment; if patients have the right to die and the right to refuse treatment; if patients should be assisted to die or helped to undergo active euthanasia; and if severely disabled newborn babies should be allowed to die. The student nurses demonstrated considerable insight into contemporary nursing issues and were ready to act as patient advocates. Professional responsibility demands that good nurses advocate strongly for patients’ choices.

scholarly journals Brain Tumor Discussions on Twitter (#BTSM): Social Network Analysis (Preprint)

2020 ◽  
Author(s):  
Josemari T Feliciano ◽  
Liz Salmi ◽  
Charlie Blotner ◽  
Adam Hayden ◽  
Edjah K Nduom ◽  
...  
Keyword(s):  
Brain Tumor ◽  
Health Care Professionals ◽  
Advocacy Groups ◽  
Content Sharing ◽  
Patient Advocate ◽  
Patient Organizations ◽  
Key Stakeholders ◽  
Patient Advocates ◽  
Medical Researcher ◽  
Over Time

BACKGROUND The Brain Tumor Social Media (#BTSM) Twitter hashtag was founded in February 2012 as a disease-specific hashtag for patients with brain tumor. OBJECTIVE To understand #BTSM’s role as a patient support system, we describe user descriptors, growth, interaction, and content sharing. METHODS We analyzed all tweets containing #BTSM from 2012 to 2018 using the Symplur Signals platform to obtain data and to describe Symplur-defined user categories, tweet content, and trends in use over time. We created a network plot with all publicly available retweets involving #BTSM in 2018 to visualize key stakeholders and their connections to other users. RESULTS From 2012 to 2018, 59,764 unique users participated in #BTSM, amassing 298,904 tweets. The yearly volume of #BTSM tweets increased by 264.57% from 16,394 in 2012 to 43,373 in 2018 with #BTSM constantly trending in the top 15 list of disease hashtags, as well the top 15 list of tweet chats. Patient advocates generated the most #BTSM tweets (33.13%), while advocacy groups, caregivers, doctors, and researchers generated 7.01%, 4.63%, 3.86%, and 3.37%, respectively. Physician use, although still low, has increased over time. The 2018 network plot of retweets including #BTSM identifies a number of key stakeholders from the patient advocate, patient organization, and medical researcher domains and reveals the extent of their reach to other users. CONCLUSIONS From its start in 2012, #BTSM has grown exponentially over time. We believe its growth suggests its potential as a global source of brain tumor information on Twitter for patients, advocates, patient organizations as well as health care professionals and researchers.

scholarly journals Putting patients first: development of a patient advocate and general practitioner-informed model of patient-centred care

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Bryce Brickley ◽  
Lauren T. Williams ◽  
Mark Morgan ◽  
Alyson Ross ◽  
Kellie Trigger ◽  
...  
Keyword(s):  
General Practice ◽  
Focus Groups ◽  
Real World ◽  
Qualitative Description ◽  
Patient Centred Care ◽  
The Real ◽  
Patient Advocate ◽  
South Wales ◽  
Patient Advocates ◽  
Future Work

Abstract Background Patients, providers and health care organisations benefit from an increased understanding and implementation of patient-centred care (PCC) by general practitioners (GPs). This study aimed to evaluate and advance a theoretical model of PCC developed in consultation with practising GPs and patient advocates. Methods Qualitative description in a social constructivist/interpretivist paradigm. Participants were purposively sampled from six primary care organisations in south east Queensland/northern New South Wales, Australia. Participants engaged in focus group discussions where they expressed their perceptions, views and feelings of an existing PCC model. Data was analysed thematically using a constant-comparison approach. Results Three focus groups with 15 patient advocates and three focus groups with 12 GPs were conducted before thematic saturation was obtained. Three themes emerged: i) the model represents the ideal, ii) considering the system and collaborating in care and iii) optimising the general practice environment. The themes related to participants’ impression of the model and new components of PCC perceived to be experienced in the ‘real world’. The data was synthesised to produce an advanced model of PCC named, “Putting Patients First: A Map for PCC”. Conclusions Our revised PCC model represents an enhanced understanding of PCC in the ‘real world’ and can be used to inform patients, providers and health organisations striving for PCC. Qualitative testing advanced and supported the credibility of the model and expanded its application beyond the doctor-patient encounter. Future work could incorporate our map for PCC in tool/tool kits designed to support GPs and general practice with PCC.

3 Steps 4 Health, a program on quality of life.

2015 ◽  
Vol 33 (28_suppl) ◽  
pp. 95-95
Author(s):  
Ann Fonfa
Keyword(s):  
Immune System ◽  
Stressful Situation ◽  
Cancer Treatments ◽  
Staff Members ◽  
Patient Advocate ◽  
Patient Advocates ◽  
The Individual ◽  
Correct Path ◽  
Risk Of Cancer

95 Background: As Patient advocates we have spent years gathering/ sharing information about simple, natural strategies to reduce risk of cancer treatment-related toxicities and strengthen the immune system. Methods: We created a simple 3 step program that absolutely anyone with cancer, at any stage, can incorporate into their own healthful protocol. Since it involves no tools and can be used at the level that an individual is at the time they start, we consider it appropriate for all. Further we cannot see any objection from the Oncologist or staff members. Step 1 is eating one more fruit and one more vegetable every day. This is helpful since studies show few Americans are getting enough fruits or vegetables. The National Cancer Institute considers ‘Five a Day’, a minimum. We want to get people started on the correct path simply and easily. Step 2 is taking a walk around the room, facility or neighborhood depending on ability and health status. This has been shown by many studies to help anyone with cancer, undergoing treatment or in recovery. We are not asking folks to become athletes; we are involving them in a plan to improve their health. Step 3: 7 deep breaths before treatment, in a stressful situation or at bedtime. This step is important to reduce stress and encourage relaxation. Results: Every step moves people forward into better health. We believe taking these first steps will lead to more healthful behaviors, better ability to handle conventional cancer treatments, and an easier recovery. Conclusions: Immune system health depends on the individual as much as any treatments. In this era of Immunology, we see a real opportunity for our Patient/Advocate-driven concept.

PP27 A Prototype Patient Advocate Decision Aid For Oncology HTA

2018 ◽  
Vol 34 (S1) ◽  
pp. 76-77
Author(s):  
Samuel Thomas ◽  
Silvia Paddock ◽  
Scott Shortenhaus ◽  
Jacqueline Zummo
Keyword(s):  
Decision Aid ◽  
Patient Centered ◽  
Continuous Innovation ◽  
Patient Advocate ◽  
Published Evidence ◽  
Patient Representatives ◽  
Patient Advocates ◽  
Definition Of ◽  
New Treatments ◽  
User Friendly

Introduction:Patient advocates need to process vast amounts of information to accurately and effectively represent heterogeneous patient groups and make meaningful contributions to HTA decisions. Although a wealth of data is available from a variety of sources, it is not often curated in user-friendly ways. Patient representatives have frequently requested tailored resources that allow them to mine the existing literature in preparation for their engagements. Developing such resources constitutes a complex challenge that requires contributions and scrutiny from multiple stakeholders.Methods:We previously developed the Continuous Innovation Indicators™ (CII), an evidence-based tool to assess treatments for twelve solid tumors (freely available at www.scoringprogress.com). The foundation of the CII is a rigorous assessment of published evidence for increased overall survival. Based on feedback from patient advocates, we are expanding the framework to include information on adverse events and other patient-centered outcomes for selected prototype indications.Results:We present a novel, flexible framework that combines evidence of efficacy with published results on other outcomes that matter to patients. Menus and outputs are designed to facilitate dialogue between advocates, clinicians, and HTA professionals. By allowing the user to adjust settings based on known heterogeneity among subpopulations, the tool's output can be used to inform discussions about the value of new interventions for defined patient segments.Conclusions:Patient representatives must frequently identify knowledge gaps in the literature before their HTA engagements and leverage this information to conduct surveys among their constituents. Our new patient advocate decision aid can support this process and facilitate a better understanding of the value of new innovations for diverse subgroups. A better definition of target populations will help to achieve balance between patient access and budget impact of new treatments. We seek feedback on our prototype from all stakeholders to further improve and maximize utility of this tool.

scholarly journals Utilizing a Peer Patient Advocate to Develop Sickle Cell Transition Educational Materials

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 5807-5807
Author(s):  
Ronisha Edwards-Elliott ◽  
Robin Johnson ◽  
Divya Bhandar ◽  
Sharice Bradford ◽  
Caroline Hodgson ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Educational Material ◽  
National Institutes Of Health ◽  
Healthcare Team ◽  
Cell Disease ◽  
Educational Materials ◽  
Patient Advocate ◽  
Patient Advocates ◽  
American Society

Background: Peer patient advocates, also called peer advocates or peer supporters have the same chronic illness as the patients that they aid to manage their health care (MacLellan, 2017). Our team developed an interactive group educational program that aimed to prepare and guide adolescents and emerging adults (AEAs) with Sickle Cell Disease (SCD) as they transition from pediatric to adult care and included a peer patient advocate as a co-facilitator of the program. Here we describe a peer advocate led process to develop an educational booklet equipped with visual aids, tables, and pertinent definitions. To our knowledge, this is a novel use of a peer patient advocate as it has not been seen in the literature before. Methods: The first iteration of the booklet was developed by the peer patient advocate based on topics discovered as important to AEAs and parents through qualitative interviews. The intent of the booklet was to be a guide and resource to four AEA's ages 16-21 as they completed the group healthcare meetings The peer advocate drew on personal experiences with SCD to make the educational booklet as relevant as possible while integrating health information from the National Institutes of Health (National Institutes of Health, 2015), American Society of Hematology (American Society of Hematology, n.d.), and Got Transition (Got Transition, n.d.). The second iteration of the program and booklet facilitated by the peer patient advocate integrated lessons learned from the pilot and was used by twelve patients ranging in age from 14-21. Each AEA was called 1-7 days prior to the next group meeting to evaluate the educational material and share their experiences. These structured interviews took between 5-10 minutes to complete was audio-recorded and transcribed into a text file that could be used for feedback analysis. Results: The AEAs overall described the booklet as useful, easy to understand, and beneficial to their learning. It was described as a resources that they found useful to go to for quick information and they enjoyed that it was related to the information presented within the group. The project overall demonstrated that using peer patient advocates as guides to the healthcare team can be very instrumental in developing patient educational materials and programs. Although peer patient advocates are not experts in developing educational material, this project demonstrates that peer patient advocates can develop excellent patient educational materials that are usable and relatable to adolescent patients with sickle cell disease. Conclusions: Having a peer patient advocate as part of the team that creates the education material can increase pertinent, usable, and relatable information for AEAs with sickle cell disease. The team felt the peer advocate's contributions were vital to the booklet content. Including a peer patient advocate to develop patient education development for other chronic diseases may be valuable for AEAs with other chronic health conditions. Disclosures No relevant conflicts of interest to declare.

scholarly journals EPID-30. A TWITTER-BASED NETWORK ANALYSIS OF BRAIN TUMOR SOCIAL MEDIA (#BTSM)

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi81-vi81
Author(s):  
Josemari Feliciano ◽  
Liz Salmi ◽  
Charlie Blotner ◽  
Adam Hayden ◽  
Edjah Nduom ◽  
...  
Keyword(s):  
Social Media ◽  
Brain Tumor ◽  
Advocacy Groups ◽  
Content Sharing ◽  
Patient Advocate ◽  
Patient Organizations ◽  
Key Stakeholders ◽  
Patient Advocates ◽  
Medical Researcher ◽  
Over Time

Abstract BACKGROUND The Brain Tumor Social Media (#BTSM) Twitter hashtag was founded in February 2012 as a disease-specific hashtag for brain tumor patients. To understand #BTSM’s role as a patient support system we describe user descriptors, growth, interaction, and content sharing. METHODS We analyzed all tweets containing #BTSM from 2012 to 2018 using the Symplur Signals platform to obtain data and to describe Symplur-defined user categories, tweet content, and trends in use over time. We created a network plot with all publicly-available retweets involving #BTSM in 2018 to visualize key stakeholders and their connections to other users. RESULTS From 2012 to 2018, 59764 unique users participated in #BTSM, amassing 298904 tweets. The yearly volume of #BTSM tweets increased by 264% from 2012 to 2018 with #BTSM constantly trending in the top 15 list of disease hashtags, as well the top 15 list of tweet chats. Patient advocates generated the most #BTSM tweets (33.0%) while advocacy groups, researchers, caregivers and doctors, generated 28.8%, 7.0%, 4.6% and 3.9%, respectively. Physician use, although still low, has increased over time. The 2018 network plot of retweets including #BTSM identifies a number of key stakeholders from the patient advocate, patient organization, and medical researcher domains and reveals the extent of their reach to other users. CONCLUSIONS From its start in 2012, #BTSM has grown exponentially over time. We believe its growth suggests its potential as a global source of brain tumor information for patients, advocates, patient organizations as well as healthcare professionals and researchers.

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