MASCC 2023 Patient-Centered Antiemetic Guidelines and Education Statements: an evidence-based and consensus resource for patients.

PURPOSE: The Multinational Association of Supportive Care in Cancer (MASCC)/European Society of Medical Oncology (ESMO) Patient Antiemetic Guideline Committee aimed to (1) adapt the updated evidence-based, clinical guidelines to patient-centered antiemetic guidelines and (2) develop patient education materials and statements. METHODS: The MASCC 2023 Patient Antiemetic Guidelines were created and reviewed by antiemetic experts and patient advocates by incorporating the 2023 MASCC/ESMO antiemetic guidelines into patient-friendly language. Patient Education Statements were developed based on current literature and by utilizing an expert modified Delphi consensus (≥ 75% agreement). Patient advocate/focus group input and patient survey results were further integrated into Patient-Centered Antiemetic Guidelines and Education Statements. RESULTS: Patient-Centered Antiemetic Guidelines were created using patient-friendly language and visual slides. Patient-friendly language was also utilized to communicate the Educational Statements. Key content categories identified for the Educational Statements included the following: nausea/vomiting definitions, causes, risk factors, categories, complications, accompanying symptoms, prophylactic antiemetic treatment, general management, when to call/what to ask the healthcare team, what caregivers can do, and available resources. All identified content met the ≥ 75% expert agreement threshold. Fifteen (15) items demonstrated 100% agreement, 11 items achieved ≥ 90% agreement, and three content items demonstrated 80 ~ 82% agreement. CONCLUSIONS: The inaugural MASCC 2023 Patient Antiemetic Guidelines can help patients and caregivers understand the prevention of nausea and vomiting related to their cancer treatment. Educational Statements provide further patient information. Educating patients on how to utilize guideline antiemetics and the education statements can contribute improvements in the control of anticancer treatment-related nausea and vomiting.

'They don't think I can do it': Experiences of self-advocates, employment specialists, and employers on employment of adults with intellectual disability.

BACKGROUND: A multi-phase Canadian study was conducted as part of a large-scale community and academic research partnership focused on understanding and improving the employment experiences of people with intellectual disabilities. METHOD: This multi-method study utilized a sequential approach, using findings from qualitative interviews (n = 28) to inform an online survey (n = 149). Participants were invited to share their experiences with paid employment or with persons with intellectual disabilities. RESULTS: Thematic analysis of data across interview and survey findings resulted in six themes: (1) assumptions and attitudes, (2) knowledge and awareness, (3) accessibility of processes, (4) use of accommodations, (5) workplace relationships, and (6) supports and resources. CONCLUSIONS: A holistic and systemic approach has the potential to improve inclusive employment experiences of people with intellectual disabilities. Action is needed mainly at the policy and employer level to reduce barriers and improve on facilitating measures reinforced by the themes shared in this study.

Training Community African American and Hispanic/Latino/a Advocates on Prostate Cancer (PCa): a Multicultural and Bicoastal Approach.

African American communities are disproportionately impacted by prostate cancer (PCa) compared to other racial/ethnic groups. Whereas the incidence of PCa in Hispanic/Latino men is lower than the incidence in non-Hispanic/Latino White men, Hispanic/Latino men are more likely to be diagnosed with PCa in late stages, and less likely to be knowledgeable about PCa, resulting in significant disparities. We developed, culturally adapted, translated, implemented, and evaluated a PCa Cancer Advocacy Training in African American and Hispanic/Latino/a communities. Culturally and language specific content for African American and Hispanic/Latino/a patients on PCa causes, risk factors, epidemiology, detection, diagnosis, and treatment were delivered through a workshop and simultaneously broadcasted in Spanish in Los Angeles County (n = 29) and in English in Tallahassee, FL (n = 9). Pre- and posttest surveys assessed impact. Pre vs post differences were statistically significant in knowledge (5.0 ± 1.6 vs 6.3 ± 1.1) and advocacy intentions (3.9 ± 0.9 vs 4.3 ± 0.8), on correctly identifying warning signs for PCa (50% vs 87%), intent to inform and educate about PCa within the next 3 months (69% vs 95%), to ensure that high-quality research is sensitive to the priorities of patients (63% vs 84%), to help increase patient recruitment, compliance, and retention for clinical trials within the next month (62% vs 84%), intent to engage in PCa patient education within the next 3 months (67% vs 92%), and in engaging in PCa community outreach within the next 3 months (67% vs 94%). There were no significant differences due to race/ethnicity. The Cancer Advocacy Training led to increased knowledge, awareness, and intention to engage in advocacy regarding PCa in the next 3 months. Results suggest that delivering culturally and language specific educational information increases engagement of Hispanic/Latino/a and African American patient/community advocates.

Self-advocates with Down syndrome research the lived experiences of COVID-19 lockdowns in Aotearoa New Zealand.

BACKGROUND: Individuals with Down syndrome are particularly vulnerable to COVID-19 because they are recognised as significantly immunocompromised. Yet their voices regarding their lived experiences of pandemic lockdowns have not been sought or heard. AIM: This study aims to describe the lived experiences of people with Down syndrome during the pandemic lockdowns in Aotearoa New Zealand to add evidence in order to inform systemic advocacy. METHOD: A mixed-methods approach positioned within an inclusive research paradigm was used, in which a group of self-advocates with Down syndrome co-designed a structured interview schedule and conducted 40 face-to-face interviews. Key themes were identified by using content analysis. RESULTS: Despite the difficulties associated with lockdowns and participants not receiving their usual supports and having to make significant adjustments, they remained positive, adapted well, and demonstrated a high level of resilience and adaptability. CONCLUSIONS: The findings add to the limited research on the lived experiences of people with Down syndrome during pandemic lockdowns. This research has given them a voice to contribute to policy, government initiatives, and service providers; particularly on issues around support during lockdown and staying connected with others.

A review of the potential impact of professional nurse advocates in reducing stress and burnout in district nursing.

Background: Stress and burnout has been leading to increased levels of absences, errors and complaints in district nursing. This problem appears to be worsening, necessitating the need for change and introducing new interventions to reverse this trend. The Professional Nurse Advocate (PNA) role is relatively new within nursing and their assitance in such instances could be of benefit to district nursing. Aim: This article aims to explore the potential role of PNAs in district nursing and whether their introduction to community settings could help reduce levels of stress, burnout and absenteeism. Method: The literature is explored with relation to the field of district nursing practice and consideration is given to why burnout is occurring, how PNAs could work to reduce this (using A-EQUIP model), and barriers that could exist. Findings: Burnout in district nursing is a significant problem that can affect quality of patient care. There is clear indication that PNAs, if used effectively, could reduce stress and burnout, and consequently lead to improved attendance, retention and quality of patient care. Conclusion: There is evidence for the potential benefits of PNAs within district nursing in terms of reducing burnout and improving patient care.

Navigated African American breast cancer patients as incidental change agents in their family/friend networks.

BACKGROUND: Patient navigation is an increasingly widespread intervention to address the persistent, severe, and disproportionate breast cancer (BC) burden that African Americans (AA) face. Navigation may have more widespread effects than previously estimated due to patient-driven diffusion of BC information. METHODS: This pilot study examined the network effects of a randomized controlled trial via recruitment of navigated and non-navigated AA BC patients as well as their network members. We estimated study arm differences in patient BC promotion (i.e., number of individuals to whom BC patients promote BC screening) and network BC screening (i.e., % BC screening among network members). RESULTS: Among our sample of 100 AA BC patients, navigated patients promoted BC screening to more individuals than non-navigated patients. BC patients were more likely to promote BC screening to children and individuals with whom they communicated more frequently. Some models further suggested more network BC screening among "navigated" network members relative to "non-navigated" network members. CONCLUSIONS: Navigated AA patients promoted BC screening more widely throughout their networks than non-navigated AA BC patients. There were also suggestive findings regarding increased BC screening among their network members. Our pilot study highlights the potential for social network analysis to improve the precision of intervention effect estimates and to inform future innovations (e.g., integrating navigation and network-based interventions) with multilevel effects on cancer health disparities.

State Policies that Impact the Design of Children's Mental Health Services: A Modified Delphi Study.

To identify the state-level policies and policy domains that state policymakers and advocates perceive as most important for positively impacting the use of children's mental health services (CMHS). We used a modified Delphi technique (i.e., two rounds of questionnaires and an interview) during Spring 2021 to elicit perceptions among state mental health agency officials and advocates (n = 28) from twelve states on state policies that impact the use of CMHS. Participants rated a list of pre-specified policies on a 7-point Likert scale (1 = not important, 7 = extremely important) in the following policy domains: insurance coverage and limits, mental health services, school and social. Participants added nine policies to the initial list of 24 policies. The "school" policy domain was perceived as the most important, while the "social" policy domain was perceived as the least important after the first questionnaire and the second most important policy domain after the second questionnaire. The individual policies perceived as most important were school-based mental health services, state mental health parity, and Medicaid reimbursement rates. Key stakeholders in CMHS should leverage this group of policies to understand the current policy landscape in their state and to identify gaps in policy domains and potential policy opportunities to create a more comprehensive system to address children's mental health from a holistic, evidence-based policymaking perspective.

Social-contextual influences on public participation in incentive programs of household waste separation.

Despite the widespread use of financial incentives to encourage public participation in household waste separation, recent studies have revealed the mixed success of this strategy. The present study seeks to advance our understanding of the social-contextual conditions in which financial incentives are more or less effective. Based on theories of social influence, it has investigated how program advocates, neighbor networks, and community norms affect public participation in incentivized waste-separation programs. Generalized linear mixed model analyses of more than 150,000 daily participation records for residents in 347 housing estates in Hangzhou, China have been conducted to examine the theoretical propositions. The results show that substituting ingroup members (block leaders) for outgroup agents (company staff) as program advocates increased the total number of participants. However, block leaders contributed little or even negatively to mobilizing people who had never participated previously. Levels of participation were higher among residents with stronger social networks, but lower in communities with more salient volunteerism norms. These findings illuminate the substantial interaction between financial incentives and social influences, suggesting ways to use social forces to improve incentive programs of household waste separation.

Developing Trauma-Informed Research Methods: Using Proxy Respondents to Assess Sexual Assault Survivors' Experiences Seeking Medical Forensic Exams.

In research on sexual assault victims' help-seeking, proxy data sources are often utilized because outreach to survivors immediately postassault may increase a study's risk-to-benefit ratio. Victim advocates and services providers are common proxy respondents, but empirical research comparing the accuracy of their information is needed. We collaborated with seven sexual assault nurse examiner (SANE) programs to collect de-identified, paired data from nurses and advocates regarding the help-seeking experiences of N = 744 adult victims. Using pairwise McNemar tests, we found statistically significant agreement on victim demographics, assault characteristics, and victims' decisions regarding medical forensic exams, sexual assault kit (SAK) collection, and release of SAKs for forensic DNA testing. Nurses and advocates had different information regarding victims' disclosure histories and their reasons for seeking SANE care.

"Promote locally led initiatives to fight female genital mutilation/cutting (FGM/C)" lessons from anti-FGM/C advocates in rural Kenya.

BACKGROUND: Female Genital Mutilation/cutting (FGM/C) is a tradition rooted in culture and involves the partial or total removal or other injury to the female genital organs for non-medical reasons. In Kenya, initiatives to abandon the practice have included 'alternative' ritualistic programmes (ARPs) combined with intensive community sensitisation about FGM/C to achieve attitudinal and behavioural changes. While there are indications of the effectiveness of these interventions, FGM/C continues to be practiced within certain groups in Kenya. This study explored the views of anti-FGM/C advocates on the barriers and facilitators to tackling FGM/C within the Meru community in Kenya. METHODS: Data were obtained using 4 Focus Groups (FGs) with 30 anti-FGM/C advocates from Tigania East and West in Meru county. Thematic framework analysis guided the analysis based on four main questions: 1) How has the cultural meaning of FGM/C evolved over time? 2) What are the perceptions in relation to the effectiveness of anti-FGM/C interventions? 3) How effective are interventions and campaigns to end FGM/C in Meru county? 4) What actions are perceived as the most likely to bring about change? RESULTS: There has been a substantial shift in the culture of FGM/C and the number of families carrying out the practice in Meru county has decreased in recent years. Participants noted five actions likely to bring about change; 1) reviving and supporting ARPs, 2) encouraging fathers' involvement in the upbringing of their daughters,3) inclusion of the topic of FGM/C in the current education curriculum and public fora, 4) strengthening the community policing strategy -Nyumba Kumi, 5) and setting up community centers for orphans. CONCLUSION: Our findings demonstrate the significance of locally led initiatives to fight FGM/C. It also became clear that change would have to start at the family level with parents, particularly fathers, taking on a more active role in the lives of their daughters. Providing education about FGM/C to communities, particularly young men coupled with keeping girls in school appeared to be some of the most effective ways of fighting FGM/C. At the community level, the church became particularly crucial in challenging the practice of FGM/C.

Who gets a CASA? Selective characteristics of children appointed a CASA advocate.

Prior research examining the effectiveness of Court-Appointed Special Advocates (CASA) as an intervention for improving the outcomes of children in state custody has been hindered by selection bias, because children may be selected to receive CASA representation based on non-random characteristics. Selection bias poses a strong threat to internal validity, and researchers have struggled to isolate the effects of CASA services on child and case outcomes. The present study examines the extent of selection bias in the CASA assignment process over a 2-year period for a full population of foster children in regions served by CASA programs in Texas (N = 32,349), thereby increasing the capacity to control for selection characteristics and supporting causal inference in ongoing studies. This analysis of CASA and state child welfare administrative data examines differences in the baseline child-, family-, and case-level characteristics of children who were appointed CASA representation compared to children who received child welfare services without CASA representation. Mixed-effect logistic regression modeling identifies independent predictors of CASA appointment while controlling for a range of factors and accounting for data clustering in the selection process. Findings indicate that CASA cases in this population have indicators of greater complexity and severity compared to their non-CASA counterparts. By empirically identifying the factors that predict assignment to CASA at the population level, this study lays the foundation for an advanced quasi-experimental outcome evaluation to examine CASA's effectiveness at improving child and case outcomes while minimizing the influence of selection bias.

[Physical restraints from the perspective of advocates of nursing home residents - a qualitative Study]. / Freiheitseinschränkung aus Sicht der Interessenvertretungen von Pflegeheimbewohnerinnen und -bewohnern − eine qualitative Studie.

Physical restraints from the perspective of advocates of nursing home residents - a qualitative Study Abstract. Background: Physical restraints are commonly used in nursing homes despite clear evidence of the lack of effectiveness and a high risk of negative consequences. Beside nurses, other persons acting as advocates of nursing home residents like relatives, legal guardians and members of the resident council, could also influence the use of physical restraints. OBJECTIVE: To describe the perceptions and attitudes of advocates of nursing home residents regarding the use and reduction of physical restraints. METHODS: Four semi-structured interviews and four focus groups with a total of 22 participants (five relatives, one legal guardian, 16 members of resident councils) were conducted for the process evaluation of a pragmatic cluster-randomised controlled trial and analysed through qualitative content analysis. RESULTS: Five categories regarding physical restraints were identified: 1. Use in nursing home setting; 2. Evaluation of use and reduction; 3. Information on use and reduction; 4. Decision about use and reduction; 5. Effects of use and reduction. Overall, the three groups of advocates describe physical restraints as necessary to prevent falls and to control challenging behaviour and have little knowledge regarding alternatives. CONCLUSIONS: Relatives, legal guardians and members of the nursing home resident council showed uncritical attitudes and a lack of knowledge towards physical restraints. Addressing these groups through information and education in interventions aiming to avoid physical restraints in nursing homes could be supportive.

The role of professionals in promoting independent living: Perspectives of self-advocates and front-line managers.

BACKGROUND: Support from professionals plays an important role in helping people with intellectual disabilities to live an independent life. This research aims to analyse the role played by support professionals based on the perceptions of the professionals and self-advocates with intellectual disabilities. The research was conducted in Catalonia (Spain). METHOD: A total of 33 interviews were conducted with front-line managers and 10 focus groups with 72 self-advocates. These were recorded and transcribed, and then analysed using thematic content analysis. RESULTS: Self-advocates particularly value professionals' interpersonal skills and emotional support. Front-line managers and self-advocates highlight training actions aimed at enhancing autonomy in the home and propose fostering natural supports and increasing the involvement of people with disabilities. CONCLUSIONS: Making progress in the rights of people with intellectual disabilities to an independent life requires requires transforming the support model, promoting decision making among people with intellectual disabilities, and strengthening interpersonal skills linked to emotional support in the training of professionals.

Historical note: How bringing women's health advocacy groups to WHO helped change the research agenda.

The politics of population control and its sometimes coercive methods in developing countries documented during the 1960s, 70s and 80s, gave rise to strong opposition by women's groups, and put into question the safety of contraceptive methods that were being developed and introduced into countries. In 1991, the Special Programme on Human Reproduction at the World Health Organization, a research programme focused on development of new methods and safety assessments of existing fertility regulation methods, started a process of "dialogue" meetings between scientists and women's health advocacy groups which lasted for nearly a decade. This paper describes the process of these meetings and what they achieved in terms of bringing new or different research topics into the agenda, and some of the actions taken as a result.

Getting food policy on the Mayoral table: a comparison of two election cycles in New York and London.

Cities and Mayors are increasingly being recognized as important in shaping social policy and improving social well-being. And municipal food policies are increasingly important as a tool to reduce food insecurity and prevent diet-related chronic diseases. Thus city governments have a unique ability to improve local food environments. To realize this potential for improving urban food environments, nutrition advocates will need to find innovative approaches for influencing municipal food policy. This paper examines Mayoral elections as a vehicle to advance food policy. To explore this strategy, Mayoral elections in two cities, New York City (NYC) and London, during two recent cycles were compared. To gather evidence multiple sources were used including campaign documents, media and opinion polls as well as the authors' own observations as food policy observers and participants in the two cities. Mayoral governance differs between NYC and London, with the Mayor in NYC having greater powers of management and administration, whilst the London Mayor has a more strategic role and may need to also use 'influence'. Food policy and related issues did not feature strongly in the first election cycles in either city. However by the 2012 and 2013 elections food issues were definitely 'on the table' and featured in main candidates' campaign literature. These latter elections also saw the importance of food advocates coming together to form common alliances and place food issues higher on the municipal agenda. In this way, food policy has become part of the election dialogue in both cities and candidates are expected to consider food policy issues. This analysis leads to make observations which could guide advocates as to how to use Mayoral elections to raise policy objectives for the benefit of public health.

Parent Peer Advocacy, Mentoring, and Support in Child Protection: A Scoping Review of Programs and Services.

Objective: Parent peer advocacy, mentoring, and support programs, delivered by parents with lived child protection (CP) experience to parents receiving CP intervention, are increasingly recognized internationally as inclusive practices that promote positive outcomes, but little is known about what shared characteristics exist across these types of programs and what variations may exist in service delivery or impact. This scoping review examines 25 years (1996-2021) of empirical literature on these programs to develop a systematic mapping of existing models and practices as context for program benefits and outcome achievement. Method: Studies were selected using a systematic search process. The final sample comprised 45 publications that addressed research on 24 CP-related parent peer advocacy and support programs. Data analysis explored how programs were studied and conceptualized and examined their impact on parents, professionals, and the CP system. Results: Substantial variation in program settings, target populations, aims, advocate roles, and underlying theoretical frameworks were identified. Across program settings, existing empirical evidence on impact and outcomes also varied, though positive impacts and outcomes were evident across most settings. Conclusions: Findings from this review highlight the need to account better for parent peer advocacy and support program variations in future practice development to ensure alignment with inclusive and participatory principles and goals. Future research is also needed to address current knowledge gaps and shed light on the impact of these differences on individual, case, and system outcomes.

'I felt part of the solution'. A qualitative study about the interface between lived experience advocates, professionals and organisations in the field of persistent pain.

Objectives: To elicit perspectives of people with persistent pain about their experiences working with pain management professionals and services as patient advocates and to consider implications for current models of involving patients in service development and research. Design: reflexive thematic analysis from a critical realist perspective. Methods: Online interviews were conducted individually with 10 participants who had acted as patient advocates in the field of persistent pain. Participants were recruited through purposive and snowball sampling. Data were analysed and organised into themes and are presented descriptively. Results: The relationship between patient advocates and the organisations they help is conceptualised as 'an unequal partnership'. Participants described positive and affirming experiences with individual health professionals and research teams (Respect). This often occurred within a context of inflexible organisational policies that presented barriers to participation including a lack of financial compensation and expectation to work to inflexible deadlines. As a result, patient advocates could experience a lack of value attributed to their experiences and voices (unmet needs from institutions). Conclusion: People with personal experience of engaging with services for persistent pain are in a strong position to contribute to service improvement. Although this contribution is recognised as valuable, it appears to be devalued by organisational barriers. Organisational policies around payment may lead to a lack of representation of those experiencing higher levels of disadvantage. As a result, services and policy makers may be missing out on insights that could be important for service development.

Top 10 Tips Palliative Care Clinicians Should Know About Messaging for the Public.

When speaking to public audiences, palliative care advocates often reach for personal experiences of great meaning and significance in their own lives, and often distill those experiences to a key message. However, this approach may not be the most effective way to engage a public audience whose closest experience with palliative care is based on social media or third-hand stories. Research demonstrates that the lay public often starts with inaccurate assumptions about palliative care, including that it is only for people at end of life. These misunderstandings can lead people with serious illness to decline palliative care services that are backed by evidence and demonstrate real benefit. This phenomenon of "declines based on inaccurate assumptions" is widely seen in clinical practice and palliative care demonstration projects. Public messaging is an evidence-based approach to engage more effectively with the public when doing outreach for palliative care. The 10 tips provided are based on a multiyear and multiorganizational project focused on improving the messaging of palliative care for the public. As palliative care services are increasingly expanded and integrated into health systems, public messaging can provide a new approach for building partnerships with the public by offering messages that consistently meet their needs based on their current perceptions. Incorporating public-informed messaging strategies could enable palliative care clinicians and advocates to address the lay public with greater confidence and clarity about how palliative care can serve them, their families, and their communities.