Facilitators and barriers to reducing chemotherapy for early-stage breast cancer: a qualitative analysis of interviews with patients and patient advocates.

BACKGROUND: As the combination of systemic and targeted chemotherapies is associated with severe adverse side effects and long-term health complications, there is interest in reducing treatment intensity for patients with early-stage breast cancer (EBC). Clinical trials are needed to determine the feasibility of reducing treatment intensity while maintaining 3-year recurrence-free survival of greater than 92%. To recruit participants for these trials, it is important to understand patient perspectives on reducing chemotherapy. METHODS: We collected qualitative interview data from twenty-four patients with Stage II-III breast cancer and sixteen patient advocates. Interviews explored potential barriers and facilitators to participation in trials testing reduced amounts of chemotherapy. As the COVID-19 pandemic struck during data collection, seventeen participants were asked about the potential impact of COVID-19 on their interest in these trials. Interviews were audio-recorded and transcribed, and researchers used qualitative content analysis to code for dominant themes. RESULTS: Seventeen participants (42.5%) expressed interest in participating in a trial of reduced chemotherapy. Barriers to reducing chemotherapy included (1) fear of recurrence and inefficacy, (2) preference for aggressive treatment, (3) disinterest in clinical trials, (4) lack of information about expected outcomes, (5) fear of regret, and (6) having young children. Facilitators included (1) avoiding physical toxicity, (2) understanding the scientific rationale of reducing chemotherapy, (3) confidence in providers, (4) consistent monitoring and the option to increase dosage, (5) fewer financial and logistical challenges, and (6) contributing to scientific knowledge. Of those asked, nearly all participants said they would be more motivated to reduce treatment intensity in the context of COVID-19, primarily to avoid exposure to the virus while receiving treatment. CONCLUSIONS: Among individuals with EBC, there is significant interest in alleviating treatment-related toxicity by reducing chemotherapeutic intensity. Patients will be more apt to participate in trials testing reduced amounts of chemotherapy if these are framed in terms of customizing treatment to the individual patient and added benefit-reduced toxicities, higher quality of life during treatment and lower risk of long-term complications-rather than in terms of taking treatments away or doing less than the standard of care. Doctor-patient rapport and provider support will be crucial in this process.

Humanization practices in the parturitive course from the perspective of puerperae and nurse-midwives.

OBJECTIVE: to understand humanization practices in the parturitive course from the point of view of purperae and nurse-midwives. METHODS: an exploratory, descriptive, qualitative research carried out in a maternity hospital in Bahia State. Semi-structured interviews were carried out, with a structured script applied to 11 mothers and 5 nurse-midwives from March to June 2019. Analysis followed Bardin's content structure. RESULTS: this study unveiled the importance of using soft care technologies, respect for female role, active participation and women's autonomy as a positive impact on the parturition process. FINAL CONSIDERATIONS: nurse-midwives are qualified professionals to assist women in labor and birth. They can favor the implantation and implementation of care with humanization practices, respect for women's choices and incentive to the normal way of delivery with an expanded view of individual and multidisciplinary needs.

Mental health service users' responses to anticipated discrimination and the Time to Change program in England.

BACKGROUND: Responses to anticipateddiscrimination are common among mental health service users and can have adetrimental impact on their recovery. Since 2009, the Time to Change (TTC)anti-stigma program in England has aimed to improve service users' empowerment,reducing public stigma and discrimination. In this paper, we aim to evaluatewhether service users' awareness of TTC is associated with fewer responses toanticipated discrimination. METHODS: We used data collected for the evaluation of TTC from samples of mental health service users interviewed by telephone in annual surveys 2009-2014. RESULTS: Five thousand and nine hundredand twenty-three participants completed the survey, mainly suffering from mooddisorders (depression, 28.4%, n = 1,681) and schizophrenia related disorders(15.4%, n = 915).In 23.2% of cases,participants were aware of any aspects of the TTC program, while participationin TTC was reported by 2.6%. Being aware of the TTC program was notsignificantly associated with responses to anticipated discrimination, exceptfor those participating in the TTC campaign in 2013. Stopping oneself fromapplying for work was significantly associated with experienced discriminationin both finding (p < 0.001) and keeping (p < 0.001) a job.Concealing mental health problems was associated with a general experience ofbeing shunned (p < 0.001). CONCLUSIONS: Awareness of a nationalanti-stigma program may not be sufficient to encourage people to seek work/educationor to be open about their illness in situations in which they currentlyanticipate discrimination. There is the need to identify new multi-levelstrategies for challenging anticipated discrimination, even focusing ondifferent target groups.

Communication in Pediatric Oncology: A Qualitative Study.

BACKGROUND: When children are seriously ill, parents rely on communication with their clinicians. However, in previous research, researchers have not defined how this communication should function in pediatric oncology. We aimed to identify these communication functions from parental perspectives. METHODS: Semistructured interviews with 78 parents of children with cancer from 3 academic medical centers at 1 of 3 time points: treatment, survivorship, or bereavement. We analyzed interview transcripts using inductive and deductive coding. RESULTS: We identified 8 distinct functions of communication in pediatric oncology. Six of these functions are similar to previous findings from adult oncology: (1) building relationships, (2) exchanging information, (3) enabling family self-management, (4) making decisions, (5) managing uncertainty, and (6) responding to emotions. We also identified 2 functions not previously described in the adult literature: (7) providing validation and (8) supporting hope. Supporting hope manifested as emphasizing the positives, avoiding false hopes, demonstrating the intent to cure, and redirecting toward hope beyond survival. Validation manifested as reinforcing "good parenting" beliefs, empowering parents as partners and advocates, and validating concerns. Although all functions seemed to interact, building relationships appeared to provide a relational context in which all other interpersonal communication occurred. CONCLUSIONS: Parent interviews provided evidence for 8 distinct communication functions in pediatric oncology. Clinicians can use this framework to better understand and fulfill the communication needs of parents whose children have serious illness. Future work should be focused on measuring whether clinical teams are fulfilling these functions in various settings and developing interventions targeting these functions.

Dental health in persons with disability.

Systemic and structural barriers limit dental health for individuals with special healthcare needs (SHCN), who have poorer dental hygiene, higher rates of dental disorders, and less access to oral care. We aimed to understand these barriers directly from the patient and caregiver population as well as review the literature on oral health of individuals with SHCN. We reviewed the literature on individuals and caregivers of those with SHCN to identify barriers to dental healthcare faced by these individuals. We focused on clinical and educational interventions to support clinicians treating this population. For the literature review, PubMed, Google, and Google Scholar were searched. We also relied upon the knowledge gained during the course of routine clinical care and patient advocacy activities. Published manuscripts were searched for the following Medical Subject Heading (MeSH) term: "Dental Care for Disabled" and the following subheading: pharmacology, adverse effects, ethics, methods, standards, and therapy. Relatively few dentists have formal training on caring for those with SHCN. Barriers faced by these individuals include accessibility, comorbidities, communication challenges, and barriers to home oral hygiene. Strong care coordination and communication between dentists, caregivers, and other providers is essential for positive outcomes. Our current dental healthcare system has failed to meet the needs of those with SHCN. The comfort and dignity of the patient are of paramount importance.

Surgeon as Double Agent: Perception of Conflicting Expectations of Patient Care and Stewardship of Resources.

BACKGROUND: Physicians must satisfy 2 competing expectations: advocate for patients and serve as stewards of resources. No guidelines exist for surgeons on resolving this conflict. We surveyed surgeons' perceptions about these dual obligations. STUDY DESIGN: We conducted our study at 2 large university hospitals in 3 distinct steps, each built on the previous one. First, we surveyed 40 surgery residents and medical students using a 10-question assessment tool as the quantitative portion of our analysis. Next, a focus group of attending surgeons was surveyed to identify themes for the qualitative part of our study. Based on these, 5 attending surgeons from varying specialties were interviewed in a semi-structured format. We used the Wilcoxon signed rank test for quantitative analysis and content analysis to report our qualitative findings. RESULTS: Students and residents did not think that they faced resource allocation decisions; however, they observed attending surgeons face them regularly (p = 0.0003). Attending surgeons from various specialties agreed that they thought they were obligated to both provide excellent care and serve as a steward of resources. All surgeons agreed these obligations can conflict. Individual practices varied with all erring on the side of patient care. Concern about being an outlier in one's section was a greater motivator to alter practice than was fear of litigation. No surgeon thought that patients had an adequate understanding of surgeons' dual agency. CONCLUSIONS: Surgeons balance the responsibilities of patient care and stewardship of resources with great variability. Diverse practices likely add to inequalities in healthcare delivery and increase mistrust. Surgeons' social contract with patients calls for transparent strategies to address their dual agency.

ALS clinical research learning institutes (ALS-CRLI): empowering people with ALS to be research ambassadors.

Objective: Patient engagement in research is increasingly recognized as important across many countries and fields. In 2008, we conducted surveys that suggested a need for improved patient engagement in ALS research. We decided to create an ALS Clinical Research Learning Institute (ALS-CRLI) to facilitate direct interactions between researchers and people with ALS and their caregivers, toward ultimately improving engagement. Methods: Initially modeled after a similar program in Parkinson's disease, our ALS-CRLI is a multi-day collection of formal courses for people with ALS and their caregivers, moderated by clinicians, scientists and patient advocates. Previous graduates (called ALS Research Ambassadors) engage with the current class participants before, during and after the courses. Prior to the courses, Research Ambassadors serve as "mentors" to the participants, offering guidance and setting expectations. Feedback during the courses is used to change the way researchers design and advertise studies, and feedback after the courses is used to improve the agenda for subsequent ALS-CRLIs. Funding is provided by patient advocacy groups including the ALS Association and ALS Hope Foundation. Research Ambassadors are provided with ongoing mentoring and notifications about opportunities for engagement via regular teleconferences with the Northeast ALS Consortium's Patient Education and Advocacy Committee and their own Facebook page. Engagement and advocacy efforts are tracked using a tool on the Northeast ALS Consortium's website. Results and Conclusions: We have now held 15 ALS-CRLIs at various locations within the United States, resulting in over 320 graduated ALS Research Ambassadors. From these engagements, researchers have been prompted to formally include patients in the design process, to design more patient-centric trials and to create new ways to help patients find trials. Research ambassadors are improving awareness and clearing up misconceptions about participation in research, improving research availability, and helping to create more patient-centric trial designs. In addition, we are now creating an ALS-CRLI Toolkit that will facilitate ALS-CRLIs throughout the world. This will be housed on the Northeast ALS Consortium website.

Care for LGBTQIA Communities When Advocacy Is All About Inclusion: A Conversation With Jackie Baras, MSN, MBA, RN.

Nurses have the obligation and duty to care for all people (American Nurses Association, 2015), and to treat them with dignity, respect, and compassion (Fowler, 2015). To address equitable care of LGBTQIA people in her community, Jackie Baras, MSN, MBA, RN, serves as LGBT Navigator at Robert Wood Johnson University Hospital/RWJBarnabas Health in New Brunswick, New Jersey. As a transgender woman, Jackie advocates as liaison and representative for all LGBTQIA patients and employees, focusing on health promotion and disease prevention, addressing knowledge gaps, and identifying community referrals, while working closely with hospital and clinical leadership to ensure that health-care services are coordinated seamlessly. Here, Jackie discusses her advocacy for equitable care for LGBTQIA communities, and ways nurses can provide culturally congruent care.

Health advocacy and primary health care: evidence for nursing.

OBJECTIVES: to analyze nursing actions involving health advocacy in the context of primary health care and the consolidation of this right to health. METHODS: this is an integrative literature review with content analysis of the results on health advocacy and its relationship with nursing in the context of primary health care. RESULTS: the content analysis of the seven selected studies resulted in two thematic categories: "Right to health - a complex and progressive consolidation movement in Brazil" and "Advocacy in health and nursing". CONCLUSIONS: despite the difficulties in defining the concept of health advocacy, nurses, in their practice, act with innovative alternatives to daily conflicts, exercising the users' right to health in their relationships with health team members and the community.

Impact of end-of-life planning on surrogate decision-maker anxiety in the US.

At the end of life, hospice patients frequently rely on surrogate decision makers (SDMs) for healthcare decisions, which creates anxiety among SDMs. This project evaluated whether an educational intervention to create a plan of care for hospice patients would reduce anxiety among SDMs. Before the intervention, immediately after the intervention, and 2 weeks following the intervention SDM anxiety was measured with the Geriatric Anxiety Scale, State Trait Anxiety Inventory-State Anxiety Scale, and one question about decision-making anxiety. Twelve patients (80±14.7 years) and 18 SDMs (60±12.9 years) completed the intervention. Immediately after the intervention SDMs showed a significant decrease (P=0.003) in anxiety. When anxiety was measured 2 weeks post-intervention, anxiety had increased again, and was no longer significantly different from pre-intervention levels. This project demonstrated that an educational intervention in the hospice setting can be effective in creating a short-term decrease to SDM anxiety levels.

Advocacy: The Pivotal Role of Oncology Nurses.

Advocacy, an important component of nursing professional practice, is pivotal to ensuring that nurses' experience and insight influence public policy. Understanding how to become engaged and receive training to inform that process can support nurses' professional development. Such engagement ensures that nurses' unique insights inform the policies that affect patient care and professional practice in oncology and beyond.

[The expert patient: a new key stakeholder in the global healthcare system]. / Le patient-expert - Un nouvel acteur clé du système de santé.

TITLE: Le patient-expert - Un nouvel acteur clé du système de santé. ABSTRACT: Dans les maladies rares, l'expertise est limitée, les connaissances restreintes, les parcours de soins incertains et les traitements inexistants ou peu efficaces. Pour améliorer les prises en charge, il est nécessaire de tirer parti de toutes les expertises disponibles, y compris celles des malades, certains d'entre eux étant devenus de véritables patients-experts.

Expertise, advocacy and activism: A qualitative study on the activities of prostate cancer peer support workers.

Peer support workers are now working with patients in a variety of settings, coming into close contact and even work alongside health professionals. Despite the potentially influential position peer support workers hold in relation to those engaged in support activities, their role, duties and their relationship to peers and health professionals lack clarity and is often defined by other actors. This study explores how peer support workers interpret and define the activities, responsibilities and knowledge associated with their work. Using methods of membership categorisation analysis, we analysed interview materials generated by conducting individual semi-structured interviews during the autumn of 2016 with prostate cancer peer support workers (n = 11) who currently volunteer as support workers in Finland. Although the peer support workers acknowledged the psychosocial aspects of the work, we argue that their interpretations extend far beyond this and encompass expertise, advocacy and activism as central features of their work. These can be used to strengthen their position as credible commentators and educators on issues relating to cancer and men's health; raise awareness and represent the 'patient's voice' and attempt to influence both policy and clinical practice. These findings suggest that by categorising their work activities in different ways, voluntary sector actors such as peer support workers can attempt to portray themselves as legitimate authorities on a range of issues and influence decision-making ranging from individual level treatment decisions all the way to health policy.