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Purpose: To understand aspects important to adults with severe cerebral palsy (CP) as they prepare to move from assisted to independent living and to create an appropriate intervention. Materials and methods: An inclusive qualitative study was conducted together with adults with severe CP (Gross Motor Function Classification Scale 4-5) preparing to move to independent living. It included semi-structured interviews which were recorded, transcribed, and analyzed by two occupational therapists to create themes. The themes were reviewed and adjusted by the partners in a group context. Results: Seven partners aged 23-47 years (median= 35 years, standard deviation = 10; 4 female) participated. Four themes arose with sub-themes: (1) house management (finances, meals, maintenance, and housework), (2) interactions and boundaries (with a caregiver, family, friends, and romantic partners), (3) schedules (work, leisure, volunteering, education, and health management), and (4) "my way" (autonomy, independence, and self-advocacy; emotions and group power). These themes expressed the concerns of the partners and formed the basis of a group intervention before their move from assisted to independent living. Conclusions: The inclusive research revealed themes the partners raised that expressed their concerns; these became the basis for a group intervention to prepare for their move from assisted to independent living. IMPLICATIONS FOR REHABILITATION: People with severe cerebral palsy raise many concerns regarding living independently. The theme most often discussed illuminated the desire for control over the process. Inclusive research allows participants to co-create a tailor-built intervention. [ABSTRACT FROM AUTHOR]

BackgroundMethodsResultsConclusionsTo better understand informal coping strategies among adolescents and young adults (AYAs) with cancer, the current investigation asked AYA study participants to describe the ‘advice’ they would offer to hypothetical peers about coping following diagnosis. This study explores the utility of the single item ‘advice’ prompt for supportive oncology research and practice.AYA cancer patients (n = 27) aged 12–25 years were recruited through electronic health record query at a single-institution health system. Participants completed semi-structured interviews. Inductive themes were described regarding advice about informal coping strategies following cancer diagnosis. The Institutional Review Board approved this study (HUM#00157267).Emergent advice themes included (1) attitude re/framing, (2) engage support network, and (3) self-advocacy. Participants advised cultivating a positive yet realistic attitude about the present and future. Reaching out to support network members and accepting help were advised, as was rebuffing unhelpful support. Participants also advocated for addressing medical information needs and building trusting relationships with clinicians.Soliciting AYA advice serves to identify informal coping mechanisms in response to life-stage-specific concerns. Future research is called to substantiate the utility of ‘advice’ as a single item tool for research and clinical questionnaires. Practice implications call for creating opportunities for AYAs to impart their advice to others (e.g. anonymous community message board) as a means of personal catharsis, altruistic service, and legitimizing AYAs as ‘embodied’ experts of their own experiences. [ABSTRACT FROM AUTHOR]

Background: The challenges of safe menstrual hygiene management practices in low-income settings, including the study areas are pressing. However, Studies specifically focusing on barriers that schoolgirls face in managing monthly menstruation in schools of Bahir Dar are inadequate and scarce. Method: To ensure the robustness of the findings, a comprehensive study was conducted among schoolgirls and boy students aged 12–20 in three schools. This study employed focus group discussions and in-depth interviews with students and leaders of the school gender club. A word cloud generator was used to visually represent frequently mentioned keywords, and the data generated from interviews were analyzed using the Open Code 4.03 tool. Results: The findings, derived from focus group discussions and in-depth interviews, revealed several significant barriers that schoolgirls face in practicing safe menstrual hygiene management. These barriers, including sociocultural factors (133), inadequate use of menstrual hygiene management facilities (73), inadequate knowledge before menarche (59), and a general lack of support (35), underscore the multifaceted nature of the issues. Importantly, these findings emphasize the urgent need for targeted interventions to address these barriers and improve menstrual hygiene management among schoolgirls. Conclusion: Schoolgirls in Bahir Dar encounter numerous challenges in maintaining safe menstrual hygiene practices. Addressing the identified modifiable barriers represents crucial areas for intervention, requiring collaborative efforts from school communities and other relevant stakeholders to create an environment conducive to promoting and enhancing safe menstrual hygiene practices. [ABSTRACT FROM AUTHOR]

Background Aim Study Design Results Conclusion Relevance to Clinical Practice The World Health Organization (WHO) emphasizes the need for radical approaches in its Global Patient Safety Action Plan, particularly in terms of interprofessional and multidisciplinary approaches. The plan highlights the importance of providing training on patient safety for all professionals, focusing on team and task‐based strategies that include bedside and simulation education. TeamSTEPPS® (Team Strategies and Tools to Enhance Performance and Patient Safety) is an educational programme developed to teach health care professionals on specific tools and strategies to enhance basic teamwork skills. Mutual support, one of the teamwork skills described in TeamSTEPPS®, involves team members assisting one another, providing and receiving feedback on performance, and advocating assertively when patient safety is threatened.The aim of this study was to explore the experiences of cardiovascular surgeons and nurses with mutual support through interprofessional collaboration in the intensive care unit (ICU) at Hacettepe University.The study employed a basic qualitative research design. The data were gathered through in‐depth interviews and analysed with inductive content analysis in accordance with Elo and Kyngäs. We used the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist to describe and report the components of study design.We interviewed 13 participants: 6 surgeons and 7 nurses. Six themes were identified: mutual support, positiveness of working in a supportive environment, feedback, effective communication, patient safety and conflict resolution.The results of our study revealed that intra/inter‐professional collaboration and mutual trust based on the variety of individual and workplace‐related factors improved patient safety through individual motivation while monitoring and supporting each other in a positive environment, providing feedback and encouraging effective communication, patient advocacy and conflict resolution.Exploring the experiences, challenges and successes of health care workers in interprofessional collaboration is crucial. Understanding team dynamics, communication barriers and collaboration strategies can help promote more effective teamwork and contribute to the development of plans to improve the quality of patient care. [ABSTRACT FROM AUTHOR]

The article discusses the role of effective science communication in advancing the field of translational gerontology. Topics discussed include Canadian editor Willard Thompson's 1953 essay which emphasized the need to address the care of the aging population and biological aging itself, challenges to the pursue of the Geroscience Hypothesis, and a twofold strategy for an effective communicative frame for the Geroscience Hypothesis.

Lung cancer remains a critical public health issue, presenting multifaceted challenges in prevention, diagnosis, and treatment. This article aims to review the current landscape of lung cancer research and management, delineate the persistent challenges, and outline pragmatic solutions. Global experts from academia, regulatory agencies such as the Food and Drug Administration (FDA) and the European Medicines Agency (EMA), the National Cancer Institute (NCI), professional societies, the pharmaceutical and biotech industries, and patient advocacy groups were gathered by the New York Lung Cancer Foundation to review the state of the art in lung cancer and to formulate calls to action. Improving lung cancer management and research involves promoting tobacco cessation, identifying individuals at risk who could benefit from early detection programs, and addressing treatment-related toxicities. Efforts should focus on conducting well-designed trials to determine the optimal treatment sequence. Research into innovative biomarkers and therapies is crucial for more personalized treatment. Ensuring access to appropriate care for all patients, whether enrolled in clinical trials or not, must remain a priority. Lung cancer is a major health burden worldwide, and its treatment has become increasingly complex over the past two decades. Improvement in lung cancer management and research requires unified messaging and global collaboration, expanded education, and greater access to screening, biomarker testing, treatment, as well as increased representativeness, participation, and diversity in clinical trials. • Lung cancer research and treatment require strong global collaborations. • Tobacco cessation and screening programs need better implementation, focusing on the at-risk population for screening. • Dedicated funding for treatment and research is needed to guarantee access for underserved communities. • Improved trial design requires early collaboration with academia, industry, organizations, and regulatory authorities. • New technologies and novel biomarkers could help personalize treatment to improve efficacy and lower toxicity. [ABSTRACT FROM AUTHOR]

This study aimed to evaluate how the adolescent and young adult (AYA) cancer community utilized Twitter to discuss the financial challenges of oncofertility care and to advocate for change. Tweets related to oncofertility and finances (n = 166), collected over a 12-week time period encompassing AYA Cancer Awareness Week, were thematically analyzed. Conversations highlighted how the high cost of care contributed to already high emotional and social distress. Proposed actions included providing timely information more equitably, improving access to financial support, and continued advocacy of policy changes to improve access to oncofertility care. Future research can explore the potential impact on policy change and clinical care. [ABSTRACT FROM AUTHOR]

Purpose: Informal caregivers (ICs) in Africa perform a long list of tasks to support hospitalization care. However, available studies are weak in accounting for the experiences of everyday role-routines of hospital-based informal caregiving (HIC) in under-resourced settings. This article explored the experiences of role-routines among informal caregivers in a Nigerian tertiary health facility. Methods: The ethnographic exploratory study relied on primary data collected from 75 participants, including 21 ICs, 15 inpatients, 36 hospital staff, and 3 ad-hoc/paid carers in a tertiary health facility in Southwestern Nigeria. Results: ICs perform several essential roles for hospitalized relatives, with each role characterized by a range of tasks. An integrative narrative of everyday routines of HIC as experienced by ICs showed critical complexities and complications involved in seemingly simple tasks of assisting hospitalized relatives with hygiene maintenance, medical investigations, blood donation, resource mobilization, errand-running, patient- and self-care and others. The role-routines are burdensome and ICs' experiences of them revealed the undercurrents of how health systems dysfunctions condition family members to support hospitalization care in Nigeria. Conclusion: The intensity and repetitive nature of role-routines is suggestive of "routinization of suffering". We recommend the closing of gaps driving hospital-based informal caregiving in Africa's under-resourced settings. [ABSTRACT FROM AUTHOR]

Adherence to professional ethics in nursing is fundamental for high-quality ethical care. However, analysis of the use and impact of nurses' codes of ethics as a part of professional ethics is limited. To fill this gap in knowledge, the aim of our review was to describe the use and impact of the Code of Ethics for Nurses with Interpretive Statements published by the American Nurses Association as an example of one of the earliest and most extensive codes of ethics for nurses with their interpretative statements and constituting a strong basis for the International Council of Nurses' Code of Ethics for Nurses. We based our review on previous literature using a scoping review method. We included both non-scientific and scientific publications to provide an analysis of codes of ethics which can be utilized in development and revision of other nurses' codes of ethics. In the searches, we used CINAHL and PubMed databases limiting publications to texts with a connection to the Code of Ethics for Nurses published from January 2001 to November 2022 and written in English. Searches yielded 1739 references, from which 785 non-scientific and 71 scientific publications were included for analysis of the data. Although non-scientific and scientific publications addressed different number of categories, the results indicated that in the both groups the use and impact focused on professional ethics, nursing practice, and work environment and less on education, research, or social health issues. Nurses' ethical standards were not addressed in non-scientific publications, and clinical issues and leadership were not in focus in scientific publications. To increase evidence-based knowledge of the impact of codes of ethics additional research is needed. Good scientific conduct was followed. [ABSTRACT FROM AUTHOR]

Background: In recent years, patient advocacy has emerged as a prominent concept within healthcare. How nursing students decide what is best for their patients is not well understood. Objective: The objective is to examine nursing students' views on doing what is best for patients during their clinical experiences and how they seek to establish patient interests when providing care. Research questions guiding the interview were as follows: (1) What are nursing students' perceptions of patient interests? (2) What factors influence nursing students' perceptions of advocating for patient's interests? Research design: Qualitative descriptive research using thematic analysis. Participants and research context: Data was collected through individual online interviews with nine nursing students with clinical experience. Ethical considerations: The study was approved by the University Research Ethics Committee. Participants provided digital informed consent. Results: The students asserted that they are able to understand the patients' interests by placing emphasis on the patients' needs. They believe that it is crucial to adopt a collaborative strategy for the provision of care to meet these requirements. In addition, some of them expressed concern over the most effective methods of advocating for the interests of patients. Three themes were identified. (1) Focussing on patient needs first, (2) taking a collective approach, and (3) learning how to advocate. Conclusions: Students understand and value the ethical commitments associated with advocating for the patient's best interest by considering factors such as prioritising the patient's needs, adopting a strategy that involves everyone, and acquiring the ability to undertake the advocacy role. Additionally, nursing education strategies in clinical contexts require additional study to inspire students to do what is in their patient's best interests. [ABSTRACT FROM AUTHOR]

The present study explored the role race-related barriers and practical barriers to treatment participation play in treatment effectiveness and satisfaction among Black families with autistic youth using a mixed-method approach. In a sample of Black caregivers with autistic youth (N = 101), multiple regressions were conducted to examine the impact of reported racial and practical barriers on parental stress, treatment effectiveness, and treatment satisfaction. Caregivers provided further narratives on their experience navigating diagnostic and treatment services in qualitative interviews. The study demonstrated that Black caregivers of autistic youth are still encountering several racial and logistical barriers when seeking treatment and diagnostic services for their children. These barriers negatively impact caregiver stress and caregiver perceived treatment quality. Contrary to the barriers and stress experienced by Black caregivers, caregivers are generally satisfied with the treatments they are utilizing and find them helpful. The narratives told by caregivers further elucidate the tumultuous experiences of Black caregivers as they seek diagnostic and treatment services for their children. An experience that may be worsened by family, professional, and systemic barriers, and can be improved by advocacy, acceptance, peer and community support, and increased knowledge. Black families of autistic youth call for increased compassion, support, training, and humility among professionals who serve autistic youth. [ABSTRACT FROM AUTHOR]

In 2020, the American Psychological Association undertook the task of examining the deleterious effects of systemic racism on people of color in the United States. This extensive examination led to the passing of three historic resolutions in October 2021, by the APA Council of Representatives, including the resolution, Role of Psychology, and APA in Dismantling Systemic Racism Against People of Color in the United States. In the resolution, there was a focus on education, science, healthcare, work and economic opportunities, criminal and juvenile justice, early childhood development, and government and public policy. These resolutions set a foundation for the field in moving forward. To effectively address systemic racism, there must be dedication and deliberate action to address the policies, structures, and practices that contribute to inequities. The primary focus of this paper is advocacy; specifically, political advocacy for psychologists to address these policies and structures, in achieving the goals of dismantling systemic racism and creating a more equitable society. [ABSTRACT FROM AUTHOR]

Many minoritized patients experience discrimination in health care. The same is true for minoritized health care clinicians, including the advanced practice registered nurse (APRN). Specifically, Black Americans have historically and disproportionally been privy to both structural racism and interpersonal racial discrimination (J Subst Abuse Treat 2022;133:108551). For patients, such exposure is associated with physical and mental health consequences, including hypertension, obesity, depression, anxiety, psychological distress, and mortality (Health Serv Res 2019;54 suppl 2(suppl 2):1399--1408). For minoritized clinicians, the subsequent result of discrimination additionally includes poor job satisfaction, decreased productivity, and high turnover (JAMA Health Forum 2023;4(12):e235249). Allyship, the act of supporting minoritized individuals while not being a member of that group, is potentially useful in improving the practice experience of minoritized APRNs, as well as positively impacting minoritized patients' outcomes. This article aims to provide actionable and practical skills for the APRN to create safe spaces for minoritized patients and partners in palliative practice. Explicitly, the role of the palliative care APRN as an ally will be reviewed as well as guidance on how to implement changes that will affect the health care experience for both patients and clinicians. [ABSTRACT FROM AUTHOR]

Background: Biosimilars offer significant advantages for improving access to biologic treatments in Latin America. However, their uptake has been slow due to misconceptions, regulatory uncertainties, and inadequate pharmacovigilance. Objective: To address these issues, Americas Health Foundation convened a multidisciplinary panel of regional experts in biosimilar use and interchangeability from Latin America. The panel assessed the current landscape and recommended steps to enhance access. Results: Key recommendations include strengthening biosimilar regulations, ensuring transparent enforcement, implementing robust pharmacovigilance, and promoting collaboration among stakeholders to educate about the safety, efficacy, and economic advantages of biosimilars and their interchangeability. Conclusions: By embracing biosimilars and interchangeability, Latin American countries can expand patient access, foster competition, diversify treatment sources, and enhance the sustainability of their healthcare systems. However, achieving these goals requires addressing knowledge gaps and biases among healthcare providers, patients, regulators, and government agencies. This can be accomplished through clear communication and the use of real-world evidence. Plain Language Summary: Biosimilars offer an opportunity to expand access to crucial biologic treatments in Latin America by providing lower-cost alternatives when patents expire. However, adopting biosimilars has been slow due to misconceptions and regulatory uncertainties. To address this, experts recommend considering approved biosimilars as interchangeable with reference products, allowing for switching without compromising safety or efficacy, with the limitation of switching only once per year. To improve access, well-defined regulations, enforcement, and transparency from regulatory agencies are necessary, along with education for healthcare providers, patients, and other stakeholders to address knowledge gaps and negative perceptions. Improved pharmacovigilance systems and collaboration between stakeholders can help communicate the benefits of biosimilars and interchangeability. By embracing biosimilars, Latin American countries can expand patient access, foster market competition, diversify treatment options, and improve the sustainability of healthcare systems. [ABSTRACT FROM AUTHOR]

Background: The ability of nurses to deliver culturally mindful health care may be vital to improving the patient-clinician relationship and subsequent health outcomes for marginalized populations. Continuing education in cultural training should be designed to enhance a nurse's cultural humility. Method: This study explores the concept of nurse cultural humility using the methods outlined by Walker and Avant (2018): define the attributes, offer a model case exemplifying the attributes, discuss the antecedents and consequences, and determine empirical referents. Results: The defining attributes of cultural humility in nursing are a lifelong process of reflexivity, an understanding and appreciation that the cultural backgrounds of both nurse and patient influence health care encounters, and a commitment to redress and mitigate power imbalances in the patient-clinician relationship. Conclusion: By clearly defining nurse cultural humility, leaders will be able to develop cultural training interventions to enhance nurse cultural humility and measure the concept accurately. [J Contin Educ Nurs. 2024;55(12):596–603.] [ABSTRACT FROM AUTHOR]

Background: Several authors hypothesized that normative values of breast related quality of life in asymptomatic populations can be helpful to better understand changes induced by surgery. Breast related quality of life can be associated to breast anthropometry. This study was designed to explore this hypothesis, find relevant correlations and, using machine learning techniques, predict values of satisfaction with breast from easy body measurements. Methods: Asymptomatic women undergoing routine clinical examination for breast cancer prevention were interviewed using the BREAST_Q V1 Breast Conserving Surgery Pre-op. Descriptive statistics was performed to describe the characteristics of the population. The Pearson correlation test defined correlation between relevant anthropometric variables and scores in each domain of the BREAST_Q. Regression analysis was employed to assess variation in the "Satisfaction with breast" domain when looking at the mirror dressed or undressed. Three machine learning algorithms were tested to predict scores in the "Satisfaction with breast domain" given body mass index and nipple to sternal notch distance. Results: One-hundred and twenty-five women underwent clinical examination and assessment of anthropometry. The reply rate to the BREAST_Q ranged from 99.2 to 88% depending on the domains. The "satisfaction with breast" domain was negatively associated either to BMI [rPearson = −0.28, CI (−0.41, −0.15) p < 0.005] and Age [rPearson = −0.15, CI (−0.29, −6.52e-03) p = 0.04]. The N_SN distance was also negatively associated to this domain with the following values for the right [rPearson = −0.34, CI (−0.45, −0.21) p < 0.000] and left side [rPearson = −0.31, CI (−0.43, −0.17) p < 0.000]. Linear regression analysis was performed on questions 1 and 4 of the "Satisfaction with Breast" domain revealing a steeper decrease for women with higher BMI values looking in the mirror undressed (Adjusted R-squared BMI: Dressed − 0.03329/Undressed − 0.08186). The combination of two parameters (BMI and N_SN distance) generated the following accuracy values respectively for three machine learning algorithms: MAP (Accuracy = 0.37, 95% CI: (0.2939, 0.4485)); Naïve Bayes (Accuracy = 0.70, 95% CI: (0.6292, 0.7755); SVM (Accuracy = 0.63, 95% CI: (0.5515, 0.7061)). Conclusions: This study generates normative scores for a Mediterranean population of asymptomatic women and demonstrates relevant associations between anthropometry and breast related quality of life. Machine learning techniques may predict scores of the "satisfaction with breast" domain of the Breast_Q using body mass index and nipple to sternal notch estimates as input. However, the algorithm seems to fail in approximately one third of the sample probably because is not able to capture many aspects of personal life. Much larger sample and more qualitative research is required before establishing any direct association between body estimates and quality of life. Clinical implications are given. [ABSTRACT FROM AUTHOR]

Artificial Intelligence (AI) has the potential to revolutionize medical training, diagnostics, treatment planning, and healthcare delivery while also bringing challenges such as data privacy, the risk of technological overreliance, and the preservation of critical thinking. This manuscript explores the impact of AI and Machine Learning (ML) on healthcare interactions, focusing on faculty, students, clinicians, and patients. AI and ML's early inclusion in the medical curriculum will support student-centered learning; however, all stakeholders will require specialized training to bridge the gap between medical practice and technological innovation. This underscores the importance of education in the ethical and responsible use of AI and emphasizing collaboration to maximize its benefits. This manuscript calls for a re-evaluation of interpersonal relationships within healthcare to improve the overall quality of care and safeguard the welfare of all stakeholders by leveraging AI's strengths and managing its risks. [ABSTRACT FROM AUTHOR]

Background: Family-based treatment (FBT), the leading intervention for adolescents with anorexia nervosa (AN), is severely understudied in outpatient care settings that serve publicly-insured populations. Many individuals with public insurance are lower-income, racially and ethnically diverse, and experience barriers to accessing evidence-based interventions for eating disorders (EDs). Methods: Semi-structured interviews were conducted with ten interdisciplinary providers who provide specialty care to youth with EDs in an inpatient and/or outpatient medical setting. Interview questions were focused on the interdisciplinary providers' experiences of caring for individuals with EDs, with a focus on differences in care for those with private insurance compared to public insurance. The interviews took place two years after training in FBT was delivered to mental health providers in San Francisco County, which created opportunities to explore provider perspectives on collaborating with newly-trained mental health providers in the community implementing FBT with publicly-insured youth. Results: Content analysis converged on three themes: the critical importance of supporting mental health treatment within the context of medical care, complex challenges when helping patients and their families navigate publicly-funded health care systems, and the overall positive impact of the FBT rollout in San Francisco County. Participants emphasized greater confidence in patient outcomes when collaborating with FBT providers and noted discord when working with providers not trained in EDs or FBT. Referral systems, weight-based stigma, and a lack of appropriate services were highlighted as significant barriers to care. To facilitate treatment engagement in publicly-insured populations, participants stressed the importance of clinicians providing psychoeducation and providing services with a high degree of cultural competence. Participants expressed that patients' ability to access FBT and providers' ability to collaborate on cases markedly improved following the county training, increasing their sense of efficacy in delivering adequate patient care. Conclusions: The discussed themes highlight the importance of access to FBT for individuals in underserved communities, which can significantly reduce both provider and patient burden. Despite various barriers to utilizing FBT in publicly-funded settings, clinicians stressed that cultural adaptations increase the implementation of and facilitate family engagement in FBT, which is consistent with previous literature examining evidence-based intervention implementation science. Plain English Summary: Publicly-insured individuals often represent lower-income, racially, and ethnically diverse populations who typically lack access to evidence-based treatment for eating disorders (EDs), such as family-based treatment (FBT). Healthcare providers working in a medical setting shared their perspectives on ED care and collaboration with community mental health providers. Participants discussed increased confidence when working with community FBT providers and described common barriers to delivering FBT in publicly-funded settings. To address these barriers, they stressed the importance of cultural competence and patient advocacy. The results of the study suggest that access to FBT providers can reduce patient and provider burden in publicly-funded settings, and highlight the need for improving systems of care to better meet the needs of vulnerable populations with EDs. [ABSTRACT FROM AUTHOR]

Background: Youth mental health service organizations continue to rapidly broaden their use of virtual care and digital mental health interventions as well as leverage artificial intelligence and other technologies to inform care decisions. However, many of these digital services have failed to alleviate persistent mental health disparities among equity-seeking populations and in some instances have exacerbated them. Transdisciplinary and intersectional knowledge exchange is greatly needed to address structural barriers to digital mental health engagement, develop and evaluate interventions with historically underserved communities, and ultimately promote more accessible, useful, and equitable care. Methods: To that end, the Digital, Inclusive, Virtual, and Equitable Research Training in Mental Health Platform (DIVERT), the Maritime Strategy for Patient Oriented Research (SPOR) SUPPORT (Support for People and Patient-Oriented Research and Trials) Unit and IWK Mental Health Program invited researchers, policymakers, interprofessional mental health practitioners, trainees, computer scientists, health system administrators, community leaders and youth advocates to participate in a knowledge exchange workshop. The workshop aimed to (a) highlight local research and innovation in youth-focused digital mental health services; (b) learn more about current policy and practice issues in inclusive digital mental health for youth in Canada, (c) participate in generating action recommendations to address challenges to inclusive, diverse and equitable digital mental health services, and (d) to synthesize cross-sector feedback to inform future training curriculum, policy, strategic planning and to stimulate new lines of patient-oriented research. Results: Eleven challenge themes emerged related to white-colonial normativity, lack of cultural humility, inaccessibility and affordability of participating in the digital world, lack of youth and community involvement, risks of too much digital time in youth's lives, and lack of scientific evidence derived from equity-deserving communities. Nine action recommendations focused on diversifying research and development funding, policy and standards, youth and community led promotion, long-term trust-building and collaboration, and needing to callout and advocate against unsafe digital services and processes. Conclusion: Key policy, training and practice implications are discussed. [ABSTRACT FROM AUTHOR]

Background: Care partners are individuals chosen by a person with an illness to support their care during hospitalization. Patients with persistent critical illness have longer than average critical care admission and often other conditions including dysphagia, communication vulnerability, severe physical deconditioning, the need for an artificial airway, and difficulty weaning from invasive mechanical ventilation. Family presence has been identified as important for patients experiencing persistent critical illness in specialized weaning centers. Despite this, the role of care partners in clinical settings for patients with persistent critical illness has not been fully characterized, particularly from the perspectives of patients, care partners, and health care providers. The aim of this study was to gain insights into the roles of care partners during persistent critical illness from the perspectives of patients, care partners, and health care providers. Methods: We used qualitative descriptive methodology including semi-structured interviews and content analysis. Interviews were audio recorded and transcribed verbatim. Included participants (n = 30) were patient survivors (n = 7), care partners of patient survivors (n = 9), and professionally diverse health care providers (n = 14) of adult patients with persistent critical illness from two specialized units in one community academic hospital in Toronto, Canada. Results: Participants across all groups described care partner roles that included physical, mental health, cognitive, social, and spiritual support of the patient, including the perceived role of safeguarding the multiple dimensions of care for the patient who is experiencing persistent critical care in specialized care settings. Discussion: The results of this study are being used to co-design, implement, and evaluate a sustainable care partner program that is acceptable, appropriate, and feasible to implement in clinical settings where the care of patients with persistent critical illness occurs. Reporting method: Consolidated criteria for reporting qualitative studies (COREQ). [ABSTRACT FROM AUTHOR]

Background: Palliative and end-of-life care (EoLC) education is available to all community and hospital healthcare staff in one NHS trust in the north-east of England. It is also available to care home and domiciliary care staff within the geographical area of the trust. Aims: This service evaluation assessed the effect of current in-house education on staff confidence levels in delivering palliative and EoLC. It also examined staff perceptions of how attendance at these courses impacted on the palliative and EoLC patients receive across the locality. Method: A mixed-methods approach was undertaken. Anonymous data were collected via surveys (n=238) sent out in March 2023 covering educational courses that were delivered from 1 January to 31 December 2022 with a 13% response rate. Quantitative data were analysed using descriptive statistics. Qualitative data were explored using Braun and Clarke's (2012) six-stage approach to thematic analysis. A second staff member was asked to review the data to increase the trustworthiness of the study. Findings: Staff confidence levels in delivering palliative and EoLC increased by 19% (somewhat confident) and 23% (extremely confident) following attendance at trust education. Staff perceived that those patients received better palliative and EoLC as a result their attendance at these courses. The qualitative data identified five main themes: symptom control, psychological support, holistic care, patient advocacy, and advance care planning. Limitations of the study included the low survey response rate and lack of exploration of patient/carer perceptions directly. Conclusion: Palliative and EoLC education can increase staff confidence levels in care delivery and, as perceived by staff, results in better care for patients receiving palliative and EoLC. These findings provide evidence for the trust to consider making palliative and EoLC training mandatory, which could also be considered more widely regionally and nationally. [ABSTRACT FROM AUTHOR]

Background: In South Africa, newly qualified physiotherapists transition to the workplace during community service, often in diverse healthcare settings, attending to patients with complex ailments. The transition is complicated by the shortage of rehabilitation personnel, especially in rural and peri-urban areas. While higher education curricula should prepare students for the workplace, the roles and expectations of new therapists remain unclear. Assessing how well current curricula, built around the CanMEDS framework, equip students with the competencies needed for entry-level community service practice will help to improve physiotherapy training practices. This study investigated the experiences of community service physiotherapists to inform curriculum design and graduate outcomes. Methods: A descriptive qualitative study was conducted. Graduates were purposefully sampled during their community service year via a class group contact, with a snowball approach to recruit diverse participants. Semi-structured interviews were conducted over MS Teams, recorded, and transcribed. Reflexive deductive coding was used to interpret the data, which was analysed around the CanMEDS roles and graduate outcomes, as well as curriculum constraints and enablers to the workplace transition. Results: Ten community service physiotherapists placed in five different provinces participated. Most identified strongly with their core role as clinicians and felt prepared in terms of clinical skills. However, aspects of roles linked to advocacy, leadership, and professionalism were more complex to navigate. The contexts of placements and the nuances of how the healthcare system operated in each province impacted their experience. Conclusion: The study highlighted varied readiness levels among community service physiotherapists. While many felt competent in specific clinical tasks, there are significant gaps in their preparation for broader community practice challenges. Participants noted their undergraduate training adequately prepared them for the clinician role but not for roles integrating collaboration, communication, patient and professional advocacy. Quality clinical placements and the role of educators were crucial, yet the protective nature of these placements limited exposure to real-world scenarios. Insufficient mentorship and support contributed to feelings of isolation. To enhance preparedness, the curriculum should integrate more experiences addressing real-world challenges, which value multiple competencies and outcomes. Future research should examine the development of context-appropriate competency frameworks and long-term effects of community service on career development. [ABSTRACT FROM AUTHOR]

Objective: Lung cancer is associated with the highest incidence and mortality of all cancers. New treatments, called targeted therapies (TT) and immunotherapies (IO), offer higher treatment efficacy and fewer side effects compared to traditional treatments but are accompanied by uncertainty and an unpredictable treatment course. There is a paucity of research on the experiences of individuals living with advanced or metastatic lung cancer receiving TT/IO, and even less is known about the supportive care needs of this population. Methods: Twenty four participants from across Canada participated in semi‐structured interviews regarding their supportive care needs. Thematic analysis was utilized to identify their supportive care needs. Results: Qualitative coding identified unmet needs and challenges. All participants indicated difficulties with unmet supportive care needs, including psychological, informational, and practical needs. Conclusions: The exploration of supportive care experiences of patients receiving TT/IO exposes high distress and unmet needs. Results indicate the need for timely and accessible supportive cancer care. Results can inform patient advocacy efforts and the development of new services. [ABSTRACT FROM AUTHOR]

Purpose: People with intellectual disabilities are high users of acute hospital care. Given their varied and often complex health-care needs, they often experience health inequalities and inequities, contributing to poorer health outcomes. As nurses are the largest health-care workforce with a patient-facing role, they have an important responsibility in meeting this populations health needs. The purpose of this paper is to explore key issues relating to the role nurses play in providing equitable health care for people with intellectual disabilities. Design/methodology/approach: This service feature draws upon relevant literature to examine key contextual issues highlighting the importance of nurses in providing equitable health care for people with intellectual disabilities. Findings: The findings from this service feature highlight the importance of nurses taking a leadership role in advocating for, and actively supporting the health needs of people with intellectual disabilities. Nurses' leadership role, along with implementing reasonable adjustments, should be underpinned by education and training relating to the bespoke health needs of people with intellectual disabilities. This should help nurses promote the health and well-being of this population. Originality/value: Addressing this populations health needs is a collective responsibility of all nurses. There are many examples of how nurses can be supported through policy, education, training and advocacy and this needs to be considered by key stakeholders and addressed as a matter of priority. [ABSTRACT FROM AUTHOR]

Language is important in health policy development. Policy changes in Australia to increase cervical screening offers a timely case example to explore the function of inclusive language in health policy. Gender and sexuality diverse people with a cervix have been largely invisible within health promotion programs, which has led to reduced awareness of, and access to, cervical screening. Twenty-eight semi-structured interviews were conducted with 29 key informants between April and October 2022 about the role of inclusive language in cervical screening policy, promotion, and delivery in the context of a national program to promote cervical screening. Three themes were identified from what key informants believed to be the role of inclusive language: (1) the common goal of inclusive language as policy advocacy for broader inclusivity; (2) the inevitable partiality of inclusive language in policy as an opportunity to start conversation; and (3) policy as a bridge between essential but diffuse components of the health sector with multidirectional influences. Inclusive language was seen to operationalise equity in health policy within the broader aim of eliminating cervical cancer among under-screened populations. [ABSTRACT FROM AUTHOR]

Objective: This study was conducted to examine the relationship between public health nurses' holistic nursing and social justice advocacy competencies in terms of their attitudes toward sustainable development goals. Design: Cross‐sectional survey. Sample: The study sample consisted of 384 public health nurses. Measurements: Data were collected with the personal information form, the Attitudes toward Sustainable Development Scale, the Holistic Nursing Competence Scale, and the Social Justice Advocacy Scale. Results: The sub‐dimensions of environment, public, education, and economy were found to significantly affect social justice advocacy, and the indirect effects of 0.191, 0.222, 0.205, and 0.201 were found to be statistically significant with the inclusion of holistic nursing competence in the model, respectively. It was found to explain 32%, 30%, 29%, and 22% of the total effect, respectively. Conclusion: It supports the claim that developing public health nurses' holistic nursing competence and social justice advocacy skills is an important criterion for achieving sustainable development goals. [ABSTRACT FROM AUTHOR]

This paper demonstrates the essential nature of oncology social work and the critical role that oncology social workers (OSWs) play in the achievement of high-quality cancer care that improves patient outcomes, contains cost, advances population health, reduces provider burn-out among healthcare providers, and does it in a manner that addresses disparities and achieves equity. To this end, this paper's purpose is two-fold: (1) to review and demonstrate OSW contributions to the advancement of comprehensive cancer care over the last 15 years, and (2) to consider next steps for the Association of Oncology Social Work (AOSW) and the Oncology Social Work profession to achieve its mission and calling. To enhance the viability and security of OSWs and the professional organizations that support them, this report summarizes a breadth and depth of work and includes recommendations for the profession. [ABSTRACT FROM AUTHOR]

AIM The aimof this study was to analyze nursing student level of knowledge and understanding of current experiences of Indigenous people within the Canadian health care system to identify curricular gaps that need to be addressed. BACKGROUND In response to the 2015 Truth and Reconciliation Commission of Canada, nursing schools have begun incorporating Indigenous health content into curricula. However, few studies about the implementation and effectiveness of this education exist. METHOD Students wrote a reflection and engaged with colleagues' reflections after watching a video from the Aboriginal Peoples Television Network. Fifteen reflections were selected using systematic, random sampling to undergo thematic analysis. RESULTS Two themes were identified: 1) students' understanding of barriers Indigenous populations face when accessing the health care system and 2) students' perceptions of strategies to ensure culturally safe care for Indigenous populations. CONCLUSION Analysis of students' learning through a reflection activity can improve the Indigenous health content curriculum. [ABSTRACT FROM AUTHOR]

Aim: To learn from two jurisdictions with mature genomics‐informed nursing policy infrastructure—the United States (US) and the United Kingdom (UK)—to inform policy development for genomics‐informed oncology nursing practice and education in Canada. Design: Comparative document and policy analysis drawing on the 3i + E framework. Methods: We drew on the principles of a rapid review and identified academic literature, grey literature and nursing policy documents through a systematic search of two databases, a website search of national genomics nursing and oncology nursing organizations in the US and UK, and recommendations from subject matter experts on an international advisory committee. A total of 94 documents informed our analysis. Results: We found several types of policy documents guiding genomics‐informed nursing practice and education in the US and UK. These included position statements, policy advocacy briefs, competencies, scope and standards of practice and education and curriculum frameworks. Examples of drivers that influenced policy development included nurses' values in aligning with evidence and meeting public expectations, strong nurse leaders, policy networks and shifting healthcare and policy landscapes. Conclusion: Our analysis of nursing policy infrastructure in the US and UK provides a framework to guide policy recommendations to accelerate the integration of genomics into Canadian oncology nursing practice and education. Implications for the profession: Findings can assist Canadian oncology nurses in developing nursing policy infrastructure that supports full participation in safe and equitable genomics‐informed oncology nursing practice and education within an interprofessional context. Impact: This study informs Canadian policy development for genomics‐informed oncology nursing education and practice. The experiences of other countries demonstrate that change is incremental, and investment from strong advocates and collaborators can accelerate the integration of genomics into nursing. Though this research focuses on oncology nursing, it may also inform other nursing practice contexts influenced by genomics. [ABSTRACT FROM AUTHOR]

Background: In the dynamic landscape of healthcare, nurses play a crucial role as ethical stewards, responsible for whistleblowing, nurse advocacy, and patient safety. Their duties involve ensuring patient well-being through ethical practices and advocacy initiatives. Aim: This study investigates the ethical responsibilities of nurses regarding whistleblowing and advocacy in reporting concerns about patient safety. Research Design: A cross-sectional study utilized cluster and simple random sampling to gather a representative sample of actively practicing registered nurses. Data collection involved a demographic form, Nurse Whistleblowing Intentions Scale, Nursing Advocacy Scale, and Clinical Decision-Making Scale. Participants and Research Context: The study utilizing a robust sample size determination formula for reliable findings included 96 diverse nurses, predominantly females. Engaged actively in direct patient care across various outpatients clinics. The recruitment process specifically sought individuals with expertise in safety protocols and reporting, contributing to a nuanced understanding of the study's focus. Ethical Considerations: Ethical approval was obtained from the ethics committee of the university and the hospitals involved. Written consent was obtained from the participants. A thorough ethical review was conducted to guarantee participant protection and adherence to ethical principles. Results: Surveyed nurses demonstrated positive whistleblowing (Overall Mean Score: 3.58), high advocacy (Overall Mean Score: 12.2), and nuanced ethical decision-making for patient safety (Overall Mean Score: 15.78). Demographic factors, such as nationality and ethical training, significantly impacted whistleblowing intentions, while age, gender, and ethical training correlated with nursing advocacy behavior. Associations with experience and qualification emerged in ethical decision-making. Conclusion: The gained insights foster targeted interventions, improving ethical practices, advocacy, and informed decision-making in nursing. This study explores the intricate link between demographics and ethical considerations among surveyed nurses, acting as a catalyst for ongoing initiatives to strengthen the ethical foundation in healthcare sector. [ABSTRACT FROM AUTHOR]

The European Federation of Neurological Associations (EFNA) brings together European umbrella organizations of pan‐European neurological patient advocacy groups (www.efna.net) and strives to improve the quality of life of people living with neurological conditions and to work towards relieving the immense social and economic burden on patients, carers and society in general. This article provides an overview of EFNA's activities and achievements over the past two decades, the evolution of patient advocacy during those years, and the increased role and impact of the European patient voice in the neurological arena. [ABSTRACT FROM AUTHOR]

Background: Moral distress is defined as knowing the right course of action to take but being hindered by institutional constraints. Objective: The purpose of this study was to explore surgical intensive care unit (SICU) nurses' experiences of moral distress, moral residue, coping, and perceived quality of patient care. Method: A descriptive qualitative approach used in-depth, semistructured individual interviews of SICU nurses in a metropolitan, academic medical center until theoretical saturation occurred. Results: Five themes were identified from 21 interviews. Root causes of moral distress were identified including end-of-life care, conflicts with management, staffing, inadequate resources, communication problems, power differentials between physicians and nurses, and working with incompetent providers. Interviews highlighted the torment experienced by participants, which demonstrated that unacknowledged moral distress impacted their quality of patient care and well-being. Accounts provided insight into patient care that was perceived to be wrong. Well-being was affected as 2 participants sought inpatient psychiatric treatment for moral distress, whereas others were looking for new nursing careers, and many were in school to leave the SICU. Discussion: This study is unique because it corroborated Epstein and Hamric's Crescendo Effect framework by providing indepth analyses of moral distress, moral residue, and the crescendo effect and how these concepts developed within SICU nurses when left unaddressed. Interviews revealed that unacknowledgedmoral distress createdmoral residue, which subsequently impacted the quality of patient care and the nurses' well-being. [ABSTRACT FROM AUTHOR]

Dravet Syndrome is a severe developmental and epileptic encephalopathy with significant care needs for affected individuals and families. Our objective was to characterise the caregiver burden and therapeutic needs of families caring for an individual with Dravet Syndrome from child to adulthood, to examine age related differences in co-morbidities, and identify current gaps in health and social care. Cross-sectional national survey conducted by the patient advocacy group Dravet Syndrome UK (DSUK) emailed to registered families caring for an individual with a confirmed diagnosis of Dravet syndrome. To characterise the sample, quantitative data on demographics, diagnostic journey, co-morbidities, therapies, healthcare utilisation, social care and funding, and impact on family life were collected. Qualitative data were analysed using grounded theory to develop a model of impact and service need. 165 out of 381 families (43 %) responded. 90 % of adult Dravet syndrome patients waited >12 months to receive a diagnosis, compared to 25 % families with a young child (p < 0.001). 96 % reported intellectual disability as co-morbidity, more frequently observed in older Dravet syndrome individuals (p < 0.001), alongside autism/autistic-like symptoms (χ2 = 15.3, df = 3 p = 0.001) and scoliosis (χ2 = 28.4, df = 3, p < 0.001). Sleep problems are associated with greater impact on caregiver's mental well-being (χ2 = 13.2, df = 2, p < 0.001). 77 % of families wished more discussions about sudden unexpected death in epilepsy (SUDEP) and 50 % rated the paediatric to adult transition experience as 'poor'. 90 % of caregivers were unable to continue working as normal with negative impact on their quality of life (p = 0.024) and mental well-being (p = 0.007). Families are profoundly impacted by Dravet syndrome. Their experience changes over time as people with Dravet syndrome become older and present with increasing levels of health, cognitive and behavioural comorbidities. Families will benefit from improved communication with health care professionals, psychosocial interventions and better access to social care. • Dravet syndrome families need better information and support during diagnostic journey. • Comorbidities such as intellectual disability, autism and scoliosis increase in older patients. • Health and social care needs for Dravet syndrome patients change with age. • Caregivers require more information on sudden unexpected death in epilepsy (SUDEP). • More families would like counselling offered to them. [ABSTRACT FROM AUTHOR]

Background: Advanced practice nurses (APNs) have been responding to worldwide changing patient comorbidities, inequalities within access to care, and a shortage of primary care physicians. The scope of practice for these nurses has been expanding internationally but varies across different jurisdictions. For a period of time during the COVID-19 pandemic, APN trainees' opportunities to work with international mentors in-person were limited. Objective: This study aimed to evaluate the effectiveness of a virtual seminar series in supporting growth in clinical judgment, skills in nursing leadership, and advocacy to optimize APNs' scope of practice. Methods: A preexperimental study was conducted in one cohort of students in the Doctor of Nursing (DN) program at The Chinese University of Hong Kong. A total of 10 prerecorded seminars were presented by nurse practitioners (NPs) in Canada on various disease topics. The evaluation of these seminars focused on the effectiveness of teaching by each speaker and the perceived confidence of learners in carrying out each domain of the APN scope of practice. Results: The study found that the virtual seminar series was effective in improving learners' perceived confidence in carrying out each domain of the APN scope of practice. The perceived teaching effectiveness of each speaker was also evaluated and found to be positive. Conclusions: The virtual seminar series was an effective strategy in supporting newly graduated APNs' professional transitions, particularly when opportunities for collaboration and education were limited due to the COVID-19 pandemic. Implications for Nursing: Mentorship, experiential learning, interprofessional training, and professional socialization are vital strategies for supporting APNs' professional development. The virtual seminar series can be an effective strategy for supporting APNs' scope of practice growth, especially in the current global pandemic context. [ABSTRACT FROM AUTHOR]

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Background: Consumer involvement in healthcare service organisation and policy development is recognised globally as a vital strategy in improving the quality and patient-centredness of care. There are significant gaps in knowledge about consumer involvement in practice, including consumers’ engagement in the process of enhancing cancer services. This study aimed to explore consumers’ perspectives on their involvement in cancer service improvement. Methods: Cancer consumer representatives were recruited through Victorian Integrated Cancer Services, Australia. Eligible consumers were, or had been, a member of a health service improvement-related committee or project and attended at least one meeting with health professionals. Semi-structured qualitative interviews were conducted online and transcribed verbatim. Data were analysed using inductive thematic analysis. Results: Six experienced consumer representatives were interviewed. Perspectives on their involvement in improving cancer services were categorised into three major topics. The first addressed personal aspects of involvement, in which participants described personal motivations (e.g., having lived experience of cancer themselves or in their family), challenges encountered in committee involvement, experiences of received support in their role as a consumer representative, concerns about narrow representation, and their evolving identity as a consumer representative. The second discussed practical contributions made by consumer representatives to improve systems and services. Participants detailed their active engagement with committees and consumer-led projects, contributing both their cancer experiences and general or professional skills. The third topic focused on directions for improving consumer involvement in the health system. Suggestions highlighted widening consumer representation to include often marginalised voices to inform decision-making at local committee and health system levels. Conclusions: This study enhances the real-world understanding of the role that consumer representatives play in improving cancer health services. The strategies suggested in our research provide the opportunity to enhance consumer involvement and pave the way for more effective cancer service planning and implementation across diverse healthcare settings. [ABSTRACT FROM AUTHOR]

Background : Involving stroke patients in clinical research through patient engagement aims to ensure that studies are patient-centered, and may help ensure they are feasible, ethical, and credible, ultimately leading to enhanced trust and communication between researchers and the patient community. In this study, we have conducted a scoping review to identify existing evidence and gaps in SPSE. Methods: The five-step approach outlined by Arksey and O'Malley, in conjunction with the Preferred Reporting Items for Scoping Reviews (PRISMA-ScR) guidelines, provided the structure for this review. To find relevant articles, we searched PubMed, Web of Science, and Embase databases up to February 2024. Additionally, the review team conducted a hand search using Google Scholar, key journals, and references of highly relevant articles. Reviewers screened articles, selecting eligible English-language ones with available full texts, and extracted data from them into a pre-designed table tested by the research team. Result: Of the 1002 articles initially identified, 21 proved eligible. Stakeholder engagement primarily occurred during the design phase of studies and within the studies using qualitative methodologies. Although the engagement of stakeholders in the research process is increasing, practice regarding terminology and principles of implementation remains variable. Researchers have recognized the benefits of stakeholder engagement, but have also faced numerous challenges that often arise during the research process. Conclusion: The current study identifies stakeholder groups and the benefits and challenges researchers face in implementing their engagement. Given existing challenges and limited specific models or frameworks, it is suggested to explore applied recommendations for stakeholder engagement in future studies, that may enhance stakeholder engagement, overcome obstacles, and unify researchers' understanding of engagement and implementation. [ABSTRACT FROM AUTHOR]

ABSTRACT Objective Design Setting Sample Methods Main Outcome Measures Results Conclusions Deaf and hard of hearing (DHH) women experience higher rates of reproductive healthcare barriers and adverse birth outcomes compared to their hearing peers. This study explores the pregnancy experiences of DHH women who do not sign to better understand their barriers and facilitators to optimal perinatal health care.Qualitative study using thematic analysis.Semi‐structured, individual remote, or in‐person interviews in the United States.Twenty‐two DHH English speakers (non‐signers) who gave birth in the United States within the past 5 years.Semi‐structured interviews explored how DHH women experienced pregnancy and birth, including access to perinatal information and resources, relationships with healthcare providers, communication access, and their involvement with the healthcare system throughout pregnancy. A thematic analysis was conducted.The barriers and facilitators related to a positive perinatal care experience among DHH women.Five key themes emerged. For barriers, healthcare communication breakdowns and loss of patient autonomy highlighted DHH women's struggle with perinatal health care. In contrast, DHH participants outlined the importance of accessible health communication practices and accommodations, use of patient advocacy or self‐advocacy, and assistive technologies for DHH parents for more positive perinatal care experiences.Perinatal healthcare providers and staff should routinely inquire about ways to ensure an inclusive and accessible healthcare experience for their DHH patients and provide communication accommodations for optimal care. Additionally, healthcare providers should be more aware of the unique parenting needs and resources of their DHH patients. [ABSTRACT FROM AUTHOR]

Background: INCbase is an international, multicenter prospective observational study using a customizable web-based modular registry to study the clinical, biological and electrophysiological variation and boundaries of chronic inflammatory demyelinating polyneuropathy (CIDP). The primary objective of INCbase is to develop and validate a clinical prediction model for treatment response. Methods: All patients meeting clinical criteria for CIDP can be included in INCbase. Collected data include demographics, clinical history, diagnostics and various domains of clinical outcomes. Data is collected at a minimum of every 6 months for two years, and more frequently at the discretion of the investigational site to allow for assessment of unexpected changes in treatment response or clinical status. Participants can be enrolled in various sub-studies designed to capture data relevant to specific groups of interest. Data is entered directly into the web-based data entry system by local investigators and/or participants. Collection and local storage of biomaterial is optional. To develop a clinical prediction model for treatment response, newly diagnosed patients with active disease warranting start of first-line treatment will be included. The study population will be split into a development and validation cohort. Univariate and multivariate logistic regression analysis will be used to identify and combine predictors at start of treatment for treatment response at six months. Model performance will be assessed through discrimination and calibration in an external validation cohort. The externally validated prediction model will be made available to researchers and clinicians on the INCbase website. Discussion: With this study, we aim to create a clinically relevant and implementable prediction model for treatment response to first line treatments in CIDP. INCbase enrollment started in April 2021, with 29 centers across 8 countries and 303 patients participating to date. This collaborative effort between academia, patient advocacy organizations and pharmaceutical industry will deepen our understanding of how to diagnose and treat CIDP. [ABSTRACT FROM AUTHOR]

While preventing renal damage and symptomatic urinary tract infection are of paramount importance to persons with a spinal cord lesion (SCL), patient-reported outcomes (PROs) are receiving much more attention than ever before. We performed a cross-sectional internet survey of 282 adult members of SCL patient advocacy groups and investigated, for the first time, the impact of different types of urinary catheter, including a Japanese reusable silicone catheter and a reusable intermittent balloon catheter, on PROs of persons with SCL. Intermittent self-catheterization (ISC) did not surpass continuous indwelling catheterization in terms of a disease-specific urinary quality of life. Urinary incontinence, regular ISC, and performing ISC away from home confronted these individuals. Work productivity and regular activities correlated fairly well with the disease-specific urinary quality of life. Bowel management problems affected all PROs evaluated. The absence of differences in PROs among the types of catheter used for ISC implies that Japanese reusable catheters have the potential to benefit selected persons with SCL. Further research is warranted to develop measures for maximizing work productivity by overcoming urinary as well as bowel problems. [ABSTRACT FROM AUTHOR]

Background: Even though human rights advocacy is a part of mental health care, psychiatric nurses in South Africa's primary healthcare (PHC) setting face substantial challenges when advocating for the rights of mental health care users (MHCUs). The study aimed to develop a conceptual framework to facilitate psychiatric nurses' advocacy for mental healthcare users' human rights in a PHC setting. Methods: A qualitative, exploratory, descriptive, and contextual design was used to investigate the psychiatric nurses' experiences advocating for MHCUs' human rights in a PHC setting. Three phases were followed: the empirical phase, the classification of concepts, and a development phase. Following the empirical phase, a conceptual framework was developed to facilitate psychiatric nurses' advocacy for MHCUs human rights in a PHC setting. Results: Three themes were derived from focus group interviews with psychiatric nurses in the empirical phase. These themes yielded the central concept as 'the facilitation of empowerment' of psychiatric nurses in advocating for MHCUs' human rights. The central concepts were also classified. A conceptual framework was developed that included the relationship, working and termination phases. Conclusion: The study described the development of a conceptual framework to facilitate psychiatric nurses' advocacy for mental healthcare users' human rights in a PHC setting. Psychiatric nurses play a key role in advocating for the human rights of MHCUs. This task is important and should be implemented from the government to the societal level, including all stakeholders. [ABSTRACT FROM AUTHOR]

Navigating health and social care in the United States can be difficult for people of all ages, but older adults often have multiple health problems, chronic illnesses, and disabilities that can increase the complexities of their care. To assist older adult patients and/or their caregivers with coordinating care, and providing information, advocacy, and resources, Henry Ford Health (HFH) implemented a Senior Care Navigation Program (SCNP). Older HFH patients or their caregivers were referred to the SCNP either by a provider or another member of their care team. A senior navigator (SN) then reached out to the patient/caregiver by telephone to discuss the SCNP and their support/care needs. The SN scheduled follow-up calls as needed. Patients/caregivers enrolled in Phase 1 of this pilot program were given the option to join the evaluation group. These patients were interviewed by an independent research interviewer at baseline, 3-, 6-, and 9-month post initial contact to complete 5 patient-reported outcomes measures. Our Phase 1 pilot has demonstrated significant improvements in the EQ5D (health-related quality of life) and two patient-reported outcomes measurement information system (PROMIS) measures (depression and anxiety) suggesting that the SCNP program at HFH is having a positive impact on older adult patients' health and well-being. In Phase 2, we will further evaluate the impact of the SCNP on healthcare utilization. [ABSTRACT FROM AUTHOR]

ABSTRACT The 2023 Cure Ocular Melanoma (CURE OM) Global Science Meeting was held in Philadelphia on November 6, 2023. There is increased awareness and dedicated research in uveal melanoma (UM), but unmet needs remain in the prevention, detection, and treatment of UM. The purpose of this meeting was to provide an international forum for the exchange of research ideas, to allow for discussion of basic science as well as clinical research on UM, and to gather input about advocacy and patient needs. [ABSTRACT FROM AUTHOR]

Introduction: To establish clinical trial readiness for dystonia, a crucial step is to develop a Patient-Centered Outcome (PCO) measure to capture therapeutic response in focal dystonia such as in cervical dystonia (CD). Botulinum neurotoxin (BoNT) is the gold standard treatment for focal dystonia and yields improvement; yet the therapy may not meet all patient expectations as there is a high rate of discontinuation. A PCO that can measure therapeutic response, including the waxing and waning benefit of BoNT, across multiple domains and is easy to use on a frequent basis in the home environment is critical. Methods: A modified iterative Delphi process based on FDA (Food and Drug Administration) guidelines was used to develop and select items to document patient symptoms and response to treatment. Potential items then were improved using patient focus groups, validated for content with specialist panels, and confirmed items based on a patient survey. Using data from 200 CD patients in the Dystonia Coalition Natural History Database, initial PCO items were identified. Utilizing Random Forests, prospective items were analyzed for their contribution to the overall severity scores on the clinical and patient-centered outcome scales. Items that were repetitive were merged. Iterative meetings with a specialist panel consisting of neurologists, physical therapists, and Patient Advocacy Group (PAG) representatives as well as virtual focus groups of CD patients were held. An online survey was conducted with over 600 CD patients participating. Finally, specialist panel members provided input for a content validity ratio (CVR) with iterations until there was good agreement as to the relevance and clarity of the items. Results: PCO measures tailored for CD were successfully developed. The PCO consists of 16 items covering three domains (motor, disability, and psychosocial) and reflects the input of international specialist panels, more than 800 CD patients, and PAGs (patient advocacy groups) following FDA guidance. The PCO is simple enough to be used in an app-based format compatible with smartphones and tablets. Conclusion: This comprehensive CD PCO measure was developed through the combination of using robust existing patient centered data (from previous Dystonia Coalition Projects); active engagement with PAGs to provide the patient voice; and use of virtual focus groups and online surveys. This PCO will be used in a prospective study to characterize the therapeutic response to BoNT over time. This will provide peak effect size as well as capturing the "yoyo" effect during BoNT treatment; and will prepare for a future trials. [ABSTRACT FROM AUTHOR]

The article offers a reflective exploration of the evolution of substance use services. Topics include the challenges faced by individuals with substance use disorders; the critical need for advocacy and the establishment of harm reduction measures like overdose prevention centers; and the importance of building collaborative, client-centered relationships to promote effective support for those affected by substance use.

Psychedelics such as psilocybin reliably produce significantly altered states of consciousness with a variety of subjectively experienced effects. These include certain changes to perception, cognition, and affect,1 which we refer to here as the acute subjective effects of psychedelics. In recent years, psychedelics such as psilocybin have also shown considerable promise as therapeutic agents when combined with talk therapy, for example, in the treatment of major depression or substance use disorder.2 However, it is currently unclear whether the aforementioned acute subjective effects are necessary to bring about the observed therapeutic effects of psilocybin and other psychedelics. This uncertainty has sparked a lively—though still largely hypothetical—debate on whether psychedelics without subjective effects ("nonsubjective psychedelics" or "non-hallucinogenic psychedelics") could still have the same therapeutic impact, or whether the acute subjective effects are in fact necessary for this impact to be fully realized.3,4,5 [ABSTRACT FROM AUTHOR]

Transition to adulthood is difficult for autistic teens. Speech-language pathologists (SLPs) can bridge the communication gap that often occurs between autistic youth, their health care providers, and their community. Autistic youth and adults, health care providers, and families were engaged in research discussions to better understand their transition needs from pediatric to primary care. Using qualitative analysis, themes were identified that specifically related to the social connection and mental health needs of autistic youth. Six primary themes emerged, including: (1) helping autistic individuals to feel heard; (2) having providers with more training in autism; (3) having accessible means for communication with new providers; (4) accessing mental health services with autism-informed counseling; (5) educating and empowering autistic youth to advocate for their needs; and (6) facilitating community engagement. Results highlight the importance of neurodiversity-affirming practices for autistic youth and adults. Communication goes both ways and when breakdowns occur, there are usually misunderstandings by both communication partners. As part of an interdisciplinary team, SLPs can facilitate mutual understanding between autistic youth and their non-autistic providers. [ABSTRACT FROM AUTHOR]