Mental health advocacy and activism have been highlighted as important in the effort towards creating environments for better mental health. However, relevant research in low- and middle-income country settings remains limited and lacks critical exploration. We seek to contribute to filling this gap by exploring driving factors behind mental health advocacy and activism efforts in low- and middle-income country settings. This review uses a critically informed thematic analysis employing conceptual frameworks of productive power to analyse peer-reviewed articles on mental health advocacy or activism over the last 20 years. We suggest that the current body of research is marred by superficial explorations of activism and advocacy, partly due to a lack of cohesion around definitions. Based on our findings, we suggest a conceptual framework to guide deeper explorations of mental health advocacy and activism. This framework identifies \'legitimacy\', \'context\' and \'timing\' as the main dimensions to consider in understanding activism and advocacy efforts. The fact that they remain misunderstood and underappreciated creates missed opportunities for meaningful inclusion of lived experience in policy decisions and limits our understanding of how communities envision and enact change.

Historically providing specialized advocacy training to Child and Adolescent Psychiatrists (CAP) beyond traditional medical education has been ambiguous at best. This is alarming particularly in light of the National Emergency in Child and Adolescent Mental Health and the increasing concern about health inequities resulting from social determinants of health (SDH). While Graduate Medical Education (GME) programs are adopting advocacy curricula, the authors argue that the shortage of trained CAPs and the growing need for advocacy makes it essential to focus on advocacy training that targets patients, organizations, or entire populations. The authors performed a systematic literature review across all medical specialties, highlighting the inadequacy of current advocacy training for CAPs, particularly in comparison to pediatrics, and the Accreditation Council of Graduate Medical Education (ACGME) requirements. The article suggests that advocacy training should be more emphasized in CAP training to address health inequities and promote better outcomes for children and adolescents. The training focused on medical-legal partnerships (MLP) is particularly crucial in addressing the social causes of health disparities and addressing unmet needs such as food, housing, and income that drive disparities, especially amongst vulnerable populations. The article concludes that providing an informed and evidence-based representation of current practices and methodologies used to train residents around advocacy is essential to ensure that CAPs are prepared to advocate for their patients and address health disparities resulting from SDH. Given the growing demand for mental health services and the unprecedented need for advocacy, specialized training for CAPs can no longer be ignored.

OBJECTIVE: To synthesize current evidence about the impact visiting restrictions in adult intensive care units have on family members during the COVID-19 pandemic.
METHODS: Integrative literature review.
METHODS: A total of 104 articles were retrieved. Screening yielded a total of 23 articles which were appraised for quality. Reflexive thematic analysis was applied to synthesize findings and extract themes.
METHODS: CINAHL Plus, Ovid MEDLINE, PubMed and ProQuest databases were searched for articles between January 2020 and November 2022.
RESULTS: The findings were grouped into two main themes with six subthemes. Theme 1: not being present at the bedside, and Theme 2: altered communication added to family members\' distress. Findings indicate that visiting restrictions imposed during the COVID-19 pandemic had negative consequences for family members.
CONCLUSIONS: The patient and their family are inherently connected, prioritizing family presence with the return of flexible, open visitation policies in ICU must be a priority to mitigate further harm and adverse outcomes for all.
UNASSIGNED: The review complies with the PRISMA guidelines for reporting systematic reviews.
UNASSIGNED: Nursing leaders must be included in the development of future pandemic policies that advocate family-centred care.
UNASSIGNED: No patient or public contribution was included in this review.

UNASSIGNED: Many anti-stigma programs for healthcare workers already exist however there is less research on the effectiveness of training in skills for health professionals to counter stigma and its impacts on patients.
UNASSIGNED: The objective of this study was to examine the theory base, content, delivery, and outcomes of interventions for healthcare professionals which aim to equip them with knowledge and skills to aid patients to mitigate stigma and discrimination and their health impacts.
UNASSIGNED: Five electronic databases and grey literature were searched. Data were screened by two independent reviewers, conflicts were discussed. Quality appraisal was realized using the ICROMS tool. A narrative synthesis was carried out.
UNASSIGNED: The final number of studies was 41. In terms of theory base, there are three strands - responsibility as part of the professional role, correction of wrongful practices, and collaboration with local communities. Content focusses either on specific groups experiencing health-related stigma or health advocacy in general.
UNASSIGNED: Findings suggest programs should link definitions of stigma to the role of the professional. They should be developed following a situational analysis and include people with lived experience. Training should use interactive delivery methods. Evaluation should include follow-up times that allow examination of behavioural change. PROSPERO, ID: CRD42020212527.

Increasing emphasis on patient self-management, including having patients advocate for their needs and priorities, is generally a good thing, but it is not always wanted or attainable by patients. The aim of this critical ethical review is to deepen the current discourse in patient self-advocacy by exposing various situations in which patients struggle to self-advocate. Using examples from oncology patient populations, we disambiguate different notions of self-advocacy and then present limits to the more demanding varieties (i.e., health-related, trust-based, and psychological); we argue that these limits create ethical dilemmas with respect to whether it is always desirable to encourage patients to self-advocate. We conclude that self-advocacy can be both under and overrated with respect to how much it benefits the patient with cancer, with many instances being indeterminate. Ultimately, providers must understand the patient\'s perspective relative to the challenges they are experiencing and work with them to meet their needs.

BACKGROUND: eHealth interventions have been shown to offer people living with chronic kidney disease the opportunity of embracing dialysis therapies with greater confidence, the potential to obtain better clinical outcomes and increased quality of life, and diverse and flexible designs and delivery options. eHealth interventions or solutions can offer one-way information without the possibility for dialogue, as with most mobile apps. eHealth interventions intending to enable two-way communication between patients undergoing hemodialysis and health professionals are the focus of this review. eHealth communication interventions that enable two-way communication between patients undergoing hemodialysis and health professionals is an emerging field, but issues relating to participation in eHealth communication for patients undergoing hemodialysis are scarcely described. The current conceptualization of this issue is too scattered to inform the development of future interventions. In this scoping review, we want to assemble and examine this scattered knowledge on participation in two-way eHealth communication for patients undergoing hemodialysis.
OBJECTIVE: We want to understand the participative role of people living with chronic kidney disease undergoing hemodialysis in available communicative eHealth interventions and to understand which barriers and facilitators exist for patient involvement in eHealth communication with health professionals.
METHODS: A scoping review methodology is guiding this study. Peer-reviewed primary studies, including quantitative, qualitative, and mixed methods study designs will be included. A systematic search for published studies, dissertations, and theses at the doctoral level in the English language will be conducted in five databases (MEDLINE, Embase, CINAHL, Scopus, and ProQuest Dissertations and Theses). The included literature will focus on adult (18 years or older) patients undergoing hemodialysis who are involved in eHealth communication with health professionals. Data on the type of eHealth communication interventions, the participative role, and barriers and facilitators for the involvement in eHealth communication for people undergoing hemodialysis will be extracted independently by two reviewers. The extracted data will be collected in a draft charting table prepared for the study. Any discrepancies between the reviewers will be solved through discussion or with a third reviewer.
RESULTS: Results are anticipated by the spring of 2023 and will be presented in tabular format along with a narrative summary. The anticipated results will be presented in alignment with the objectives of the study, presenting findings on the participative role of patients undergoing hemodialysis in eHealth communication interventions.
CONCLUSIONS: We anticipate that this study will inform on eHealth communication interventions and the level of patient participation in eHealth communication for patients undergoing hemodialysis. The systematized overview will possibly identify research gaps and motivate further development of eHealth communication to ensure patient participation. The findings will be of interest to key stakeholders in clinical care, research, development, policy, and patient advocacy.
UNASSIGNED: PRR1-10.2196/38615.

While rape crisis center (RCC) advocacy is generally regarded as valuable, there are no prior systematic reviews of the advocacy literature. This review examined RCC advocacy service provision, perceptions and impact of advocacy, and challenges and facilitators to effective service provision. Databases related to health and social sciences were searched including Academic Search Complete, PsychINFO, PubMed, CINAHL, ProQuest, Science Direct, OAlster, WorldCat, and MEDLINE. Empirical articles written in English that examined RCC advocacy service provision and/or impact in the US were included. The researchers reviewed abstracts and titles, and then full texts. Forty-five articles met criteria, were summarized, and double checked. Findings demonstrate advocacy is multi-faceted, beneficial, and challenging. Advocates work directly with survivors and interact with other responders on behalf of survivors. Specifically, advocates provide emotional support, safety plan, support survivors in making decisions, and assist them in navigating other systems. While advocates are generally regarded positively by survivors and responders, some responders have concerns about advocates. In addition, advocates sometimes report victim-blaming and being ill-equipped to meet survivors\' needs. Finally, advocates face specific challenges in their work with survivors and responders. Future research using diverse methodological approaches is needed to understand advocacy utilization and reach; survivors\' perceptions of advocacy; marginalized survivors\' experiences; connections between specific services, implementation, and outcomes; and effective strategies for advocates\' interactions with other responders. Additional resources to help advocates serve all survivors effectively and equitably; to support evaluator-practitioner partnerships; and to share unpublished data on advocacy may help contribute to improvements in advocacy practice.

The patient voice is becoming increasingly prominent across all stages of therapeutic innovation. It pervades research domains from funding and recruitment, to translation, care, and support. Advances in genomic technologies have facilitated novel breakthrough therapies, whose global developments, regulatory approvals, and confined governmental subsidisations have stimulated renewed hope amongst rare disease patient organisations (RDPOs). With intensifying optimism characterising the therapeutic landscape, researcher-advocate partnerships have reached an inflexion point, at which stakeholders may evaluate their achievements and formulate frameworks for future refinement.
Through this narrative review, we surveyed relevant literature around the roles of RDPOs catering to the rare paediatric neurological disease community. Via available literature, we considered RDPO interactions within seven domains of therapeutic development: research grant funding, industry sponsorship, study recruitment, clinical care and support, patient-reported outcome measures, and research prioritisation. In doing so, we explored practical and ethical challenges, gaps in understanding, and future directions of inquiry. Current literature highlights the increasing significance of ethical and financial challenges to patient advocacy. Biomedical venture philanthropy is gaining momentum amongst RDPOs, whose small grants can incrementally assist laboratories in research, training, and pursuits of more substantial grants. However, RDPO seed funding may encounter long-term sustainability issues and difficulties in selecting appropriate research investments. Further challenges include advocate-industry collaborations, commercial biases, and unresolved controversies regarding orphan drug subsidisation. Beyond their financial interactions, RDPOs serve instrumental roles in project promotion, participant recruitment, biobank creation, and patient registry establishment. They are communication conduits between carers, patients, and other stakeholders, but their contributions may be susceptible to bias and unrealistic expectations.
Further insights into how RDPOs navigate practical and ethical challenges in therapeutic development may enhance cooperative efforts. They may also inform resources, whose distribution among advocates, parents, and clinicians, may assist decision-making processes around rare disease clinical trials and treatments.

BACKGROUND: Electronic health records (EHRs) are increasingly implemented internationally, whereas digital sharing of EHRs with service users (SUs) is a relatively new practice. Studies of patient-accessible EHRs (PAEHRs)-often referred to as open notes-have revealed promising results within general medicine settings. However, studies carried out in mental health care (MHC) settings highlight several ethical and practical challenges that require further exploration.
OBJECTIVE: This scoping review aims to map available evidence on PAEHRs in MHC. We seek to relate findings with research from other health contexts, to compare different stakeholders\' perspectives, expectations, actual experiences with PAEHRs, and identify potential research gaps.
METHODS: A systematic scoping review was performed using 6 electronic databases. Studies that focused on the digital sharing of clinical notes or EHRs with people affected by mental health conditions up to September 2021 were included. The Mixed Methods Appraisal Tool was used to assess the quality of the studies. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews guided narrative synthesis and reporting of findings.
RESULTS: Of the 1034 papers screened, 31 were included in this review. The studies used mostly qualitative methods or surveys and were predominantly published after 2018 in the United States. PAEHRs were examined in outpatient (n=29) and inpatient settings (n=11), and a third of all research was conducted in Veterans Affairs Mental Health. Narrative synthesis allowed the integration of findings according to the different stakeholders. First, SUs reported mainly positive experiences with PAEHRs, such as increased trust in their clinician, health literacy, and empowerment. Negative experiences were related to inaccurate notes, disrespectful language use, or uncovering of undiscussed diagnoses. Second, for health care professionals, concerns outweigh the benefits of sharing EHRs, including an increased clinical burden owing to more documentation efforts and possible harm triggered by reading the notes. Third, care partners gained a better understanding of their family members\' mental problems and were able to better support them when they had access to their EHR. Finally, policy stakeholders and experts addressed ethical challenges and recommended the development of guidelines and trainings to better prepare both clinicians and SUs on how to write and read notes.
CONCLUSIONS: PAEHRs in MHC may strengthen user involvement, patients\' autonomy, and shift medical treatment to a coproduced process. Acceptance issues among health care professionals align with the findings from general health settings. However, the corpus of evidence on digital sharing of EHRs with people affected by mental health conditions is limited. Above all, further research is needed to examine the clinical effectiveness, efficiency, and implementation of this sociotechnical intervention.

The Queensland Mental Health Review Tribunal makes difficult decisions regarding involuntary treatment of people with mental illness, applying strict legislative criteria against a backdrop of fundamental human rights considerations. This article reports on focus group research with lawyers and advocates for people with mental illness who appear before the Queensland Mental Health Review Tribunal. Participants expressed concerns regarding the manner in which decisions are made. For example, participants said that their clients\' views on the side effects of treatment do not receive adequate consideration when involuntary treatment is authorised. We review these concerns in the light of applicable legal obligations, including those arising from human rights law. We conclude that if these concerns are accurate, some adjustments to the Queensland Mental Health Review Tribunal\'s decision-making processes are required.