Context: Participation in SCI research with caregivers of children and adolescents with spinal cord injury (SCI) can occur in a range of different ways. This review explores the extent to which caregivers' participation is connected to what might be called a voice. Objectives: To explore the voice of caregivers by collating available research with the participation of caregivers of children and adolescents with SCI, and synthesizing how the research has been conducted. Methods: The databases CINAHL, ERIC, MEDLINE, PsycInfo, and Scopus were searched for articles published between January 2008 and March 2022. Descriptive and narrative information was extracted and factors describing how caregivers participated were identified using an inductive approach. Results: Twenty-nine articles were identified, of which 28 had affiliations connected to the USA, and 25 to Shriners Hospitals for Children. In most of the articles, the caregivers were invited to participate in the research to complete or develop measures. Information from the caregivers was often captured using close-structured questions and summarized quantitatively with little or no exploration of the perspectives of the caregivers. Conclusion: The voice of caregivers of children and adolescents with SCI in research is limited by representativeness, the pre-determined emphasis, a lack of involvement in the process, and the reported narrative. By reflecting on voice, caregivers can have their experiences and perspectives acted upon to a greater extent to bring change, ultimately leading to improved care and health for children and adolescents with SCI.

Introduction Collective patient participation, such as patient participation in policy making, has become increasingly important to achieve high-quality care. However, there is little knowledge on how to let patients participate in a meaningful manner at this level. The aim of this systematic literature review was to provide an overview of barriers, facilitators, and associated impact of collective patient participation. Methods PubMed and EMBASE were searched until May 2023 for studies that evaluated collective patient participation. Study characteristics, methods for patient participation, barriers and facilitators, and impact (if measured) of patient participation were extracted from the articles. Results We included 59 articles. Identified barriers and facilitators of collective patient participation were grouped into five categories: (1) preconditions for patient participation, (2) strategy for patient participation, (3) preparation of patients and staff for patient participation, (4) support for patients and staff during patient participation, and (5) evaluation of patient participation. Impact of patient participation was reported in 34 included studies at three levels: quality of care and research, the team and organization, and the participants themselves. Only three studies reported quantitative outcomes. Conclusion Interestingly, similar challenges were experienced during a period of twenty years, indicating that little progress has been made in structuring patient participation. Our overview of barriers and facilitators will therefore help to improve and structure collective patient participation.

Objective: Psychiatric advance directives (PADs) are documents that allow users of mental health services to express their preferences for treatment in future mental health crises. To increase the use of PADs in psychiatric practice, it is helpful to consider how service users view PADs and the factors that facilitate or hinder PAD creation and implementation. A systematic review of the empirical literature on this topic may help inform evidence-based policy making. Methods: A systematic review concordant with PRISMA guidelines was conducted. Relevant electronic databases were searched up to July 2, 2021. Articles containing original empirical data on service users' perspectives on PADs were included. Data were analyzed thematically, tabulated, and narratively synthesized. Results: Fifty-three articles were identified and included. The following categories were identified: general preferences regarding factors such as legal force and revocability; benefits of PADs at the personal, treatment-related, and social levels; challenges and barriers concerning PAD creation and application; and possible and experienced facilitators of PAD creation. Conclusions: Users of mental health services are highly interested in PADs and regard them as tools to improve their involvement in care. They generally prefer legally binding PADs that can be revoked only when users are competent to consent. Barriers reported by service users were mainly related to the creation and application of PADs, and support in PAD creation was the most important facilitator identified. The involvement of mental health professionals in creating PADs appears essential to realize the benefits of PADs and to reduce barriers to their use.

Introduction: Collective patient participation, such as patient participation in policy making, has become increasingly important to achieve high-quality care. However, there is little knowledge on how to let patients participate in a meaningful manner at this level. The aim of this systematic literature review was to provide an overview of barriers, facilitators, and associated impact of collective patient participation. Methods: PubMed and EMBASE were searched until May 2023 for studies that evaluated collective patient participation. Study characteristics, methods for patient participation, barriers and facilitators, and impact (if measured) of patient participation were extracted from the articles. Results: We included 59 articles. Identified barriers and facilitators of collective patient participation were grouped into five categories: (1) preconditions for patient participation, (2) strategy for patient participation, (3) preparation of patients and staff for patient participation, (4) support for patients and staff during patient participation, and (5) evaluation of patient participation. Impact of patient participation was reported in 34 included studies at three levels: quality of care and research, the team and organization, and the participants themselves. Only three studies reported quantitative outcomes. Conclusion: Interestingly, similar challenges were experienced during a period of twenty years, indicating that little progress has been made in structuring patient participation. Our overview of barriers and facilitators will therefore help to improve and structure collective patient participation.

Background: Nurses provide 90% of health care worldwide, yet little is known of the experiences of nurses and midwives in policy development in low- and middle-income countries (LMICs). Objective: To identify, appraise and synthesize the qualitative evidence on the experiences of nurses' and midwives' involvement in policy development LMICs. Design: A qualitative systematic review using modified Joanna Briggs Institute (JBI) methodology. Setting: Low and middle-income countries. Participants: Nurses' and midwives' involved in policy development, implementation, and/or evaluation. Methods: A systematic search was undertaken across nine databases to retrieve published studies in English between inception and April of 2021. Screening, critical appraisal, and data extraction was undertaken by two independent reviewers. Results: Ten articles met inclusion criteria. All studies were published between 2000 to 2021 from a variety of LMICs. The studies were medium to high quality (70-100% critical appraisal scores). Four major themes were identified related to policy development: 1) Marginal representation of nurses; 2) Determinants of nurses' involvement (including at the individual, organization, and systematic level); 3) Leadership as a pathway to involvement; 4) Promoting nurses' involvement. Conclusion: All studies demonstrated that nurses and nurse midwives continue to be minimally involved in policy development. Findings reveal reasons for nurses' limited involvement and strategies to foster sustained engagement of nurses in policy development in LMICs. To enhance their involvement in policy development in LMICs, change is needed at multiple levels. Systemic power relations need to be reconstructed to facilitate more collaborative interdisciplinary practices with nurses co-leading and co-developing health care policies.

Aims and Objectives The aim of this study was to assess methodological quality of all currently available guidelines and consensus statements for IAD using the Appraisal of Guidelines, Research and Evaluation (AGREE) II and the AGREE Recommendation Excellence (AGREE-REX) instruments. Background Globally, incontinence-associated dermatitis (IAD) is a significant health challenge. IAD is a complex healthcare problem that reduces quality of life of patients, increases healthcare costs and prolongs hospital stays. Several guidelines and consensus statements are available for IAD. However, the quality of these guidelines and consensus statements remains unclear. Design A systematic review of guidelines and consensus statements. Methods Our study was undertaken using PRISMA guidelines. We searched seven electronic databases. Guidelines and consensus statements had to be published in English, Chinese or German languages. Five independent reviewers assessed the methodological quality of guidelines and consensus statements using the AGREE II and AGREE-REX instruments. Mean with standard deviation (SD) and median with interquartile range (IQR) were calculated for descriptive analyses. We generated bubble plots to describe the assessment results of each domain of each guideline and consensus statement. Results We included ten guidelines and consensus statements. The NICE guidelines, obtained the highest scores, fulfilled 86.11%-98.61% of criteria in AGREE II and 76.67%-91.11% for AGREE-REX. In the domains 'Stakeholder Involvement' (4.39 +/- 1.64), 'Rigor of Development' (3.38 +/- 1.86), 'Applicability' (3.62 +/- 1.64), 'Editorial Independence' (3.91 +/- 2.56) and 'Values and Preferences' (2.98 +/- 1.41), the remaining guidelines and consensus statements showed deficiencies. Conclusions Altogether, this study demonstrated that the currently available guidelines and consensus statements for IAD have room for methodological improvement. NICE guidelines on faecal incontinence and urinary incontinence have better quality. Remaining guidelines and consensus statements showed substantial methodological weaknesses, especially the domains of 'Stakeholder Involvement', 'Rigor of Development', 'Applicability', 'Editorial independence' and 'Values and Preferences'. This study was registered on INPLASY. (Registration number: INPLASY202190078). Relevance to Clinical Practice The currently available guidelines and consensus statements on IAD have room for methodological improvement.

Background Community involvement is an important component of health programme development and implementation, including those focused on chronic condition treatment and management. Yet, few studies explore the manifestations of community involvement in chronic care programmes. Our review aims to examine the evidence on how communities are involved in planning and implementing chronic condition programmes in high and upper-middle income countries. Methods Eligible studies included those that involved the community in the planning, implementation, monitoring and evaluation of health services, policy or health interventions. We searched Medline, Embase, Global Health, Scopus, and LILACs from 2000 to 2016, independently screened articles for inclusion, conducted data extraction, and assessed studies for risk of bias. Results 27,232 records were identified and after screening, 32 met inclusion criteria. We conducted a narrative synthesis to report on the forms and processes of community involvement used across mental health programmes and contrast this with the paucity of evidence on comparable programmes addressing other chronic conditions. Challenges reported included user factors, organisational factors, and social challenges such as stigma. Conclusion Our review adds to the evidence supporting community involvement in chronic condition management and the processes that contribute to successful and sustainable involvement. We report on a model, derived from inductive analysis, that considers social and cultural components, organisational factors and stakeholder relationships as underpinning the development of community interventions across the care continuum.

Purpose: To determine nurses' challenges, extent of involvement, and the impact of involvement in politics and policy making. Organizing construct: Nurses in politics and health policy making. Methods: Literature was searched in PubMed, Scopus, Google Scholar, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), OVID, and Open Grey using phrases comprising the following key words: "nurses", "policy making", "politics", "health policy", "nurses involvement in policy making/politics/health policy", "nurses challenges in policy making/politics/policy", and "impact of nursing policy making/politics/health policy"; 22 articles published from January 2000 to May 2019 were included. Findings: The major challenges included intra- and interprofessional power dynamics, marginalization of nurses in policy making, and nursing profession-specific challenges. The extent of involvement was inadequate, and nurses mainly worked as policy implementers rather than as policy developers. Those nurses who participated in policy development focused on health promotion to build healthy communities and to empower nurses and the nursing profession. Conclusions: Nurses' involvement in policy making has not improved over time. Nursing institutions and regulatory bodies should prepare and encourage nurses to work as policymakers rather than implementers and advocate for the rightful place of nurses at policy-making forums. Clinical relevance: Preparation for health system policy making starts in the clinical settings. Educational institutions and nurse leaders should adequately prepare nurses for policy making, and nurses should participate in policy making at the organization, system, and national levels.

Background Public involvement in large-scale changes (LSC) to health services is strongly promoted – and even mandated – in several health systems. This scoping review aimed to describe the evidence about how public involvement is conceptualised and conducted in LSC, with what impact, and how different stakeholders perceived this process. Methods After searching eight databases, 34 publications were included. Data were extracted and charted using a standardised form. Findings from the literature were discussed with frontline stakeholders. Results Public involvement remains poorly defined and its aims lack clarity in LSC. Public meetings are most often used to gather public views but raise the issue of representativeness. However, evidence in the literature is scarce about which involvement methods – informative and deliberative – are appropriate for the different stages of the LSC and with what impact. In several cases, the involved public felt they had no influence on decision-making regarding LSC proposals, sometimes leading to an environment of mistrust. In those instances, the public understood the technical arguments for change and actively questioned them, opposed LSC plans and sought alternative routes to voice their views. Conclusion More research and consideration are needed regarding who should be involved, with what purpose and how. We argue that in practice two models of involvement, invited and uninvited participation, coexist and therefore interactions between the two should be given further consideration in LSC.

OBJECTIVE: to identify and critically review the research literature that has examined fathers involvement during labour and birth and their influence on decision making. DESIGN: the review follows the approach of a narrative review. Systematic searches of electronic databases Social Services Abstract, Sociological Abstracts, ASSIA, CINAHL Medline, Cochrane library, AMED, BNI, PsycINFO, Embase, Maternity and Infant care, DH-Data and the Kings Fund Database were combined with manual searches of key journals and reference lists. Studies published between 1992 and 2013 examining fathers involvement during intrapartum care were included in the review. FINDINGS: the findings of this review suggest that fathers level of involvement during labour ranges from being a witness or passive observer of labour and birth to having an active supporting and coaching role. The findings also suggest that there are a number of facilitators and barriers to fathers involvement during labour and birth. There are a limited number of studies that have examined fathers involvement in decision making and specifically how fathers influence decision making during labour and birth. KEY CONCLUSIONS: future research needs to address the gap in the literature regarding fathers involvement and influence on decision making to help midwives and obstetricians understand the process in order enhance the transition to parenthood for women and men

BACKGROUND: Public involvement in health-care policy has been advocated as a means to enhance health system responsiveness, yet evidence for its impact has been difficult to ascertain. OBJECTIVES: To review the peer-reviewed empirical evidence on outcomes of public involvement in health-care policy. METHODS: We systematically searched PsychINFO and PubMed from November 2000 to April 2010 for empirical studies that reported on original research only; studies in languages other than English, German or French were excluded. Data were extracted using a standardized evidence table with a priori determined headings. MAIN RESULTS: Nineteen studies were identified as eligible for inclusion in our review. We found that sound empirical evidence of the outcomes of public involvement activities in health care remains underdeveloped. The concept and the indicators used to examine and determine outcomes remain poorly specified and inconsistent, as does the reporting of the evidence. There was some evidence for the developmental role of public involvement, such as enhancing awareness, understanding and competencies among lay participants. Evidence for instrumental benefits of public involvement initiatives was less well documented. CONCLUSIONS: Despite the growing body of work on public involvement in health-care policy, evidence of its impact remains scarce; thus, firm conclusions about involvement activities that are appropriate and effective for policy development are difficult to draw. However, focus on outcomes risks missing the normative argument that involving the public in the health-care policy process may be seen to be of intrinsic value.

Objectives To review the evidence on public involvement in the systematic review process in health and social care; to examine the different methods, levels and stages of involving the public; to synthesise the contributions of the public, as well as the identified tensions, facilitating strategies and recommendations for good practice. Method Systematic literature search and narrative review. Findings Seven case examples were found covering the following review topics: patients’ perspectives on electro-convulsive therapy; user involvement in nursing, midwifery and health visiting research; treatments for degenerative ataxias; teaching, learning and assessment of law in social work education; HIV health promotion for men who have sex with men; the conceptualisation, measurement, impact and outcomes of public involvement in health research; methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. The public was found to contribute to systematic reviews by: refining the scope of the review; suggesting and locating relevant literature; appraising the literature; interpreting the review findings; writing up the review. Numerous tensions, facilitating strategies and recommendations were identified. Conclusions The issues raised in this paper should assist researchers in developing and conducting systematic reviews with the involvement of the public.

Objective To review published examples of public involvement in research design, to synthesise the contributions made by members of the public, as well as the identified barriers, tensions and facilitating strategies. Design Systematic literature search and narrative review. Findings Seven papers were identified covering the following topics: breast-feeding, antiretroviral and nutrition interventions; paediatric resuscitation; exercise and cognitive behavioural therapy; hormone replacement therapy and breast cancer; stroke; and parents’ experiences of having a pre-term baby. Six papers reported public involvement in the development of a clinical trial, while one reported public involvement in the development of a mixed methods study. Group meetings were the most common method of public involvement. Contributions that members of the public made to research design were: review of consent procedures and patient information sheets; outcome suggestions; review of acceptability of data collection procedures; and recommendations on the timing of potential participants into the study and the timing of follow-up. Numerous barriers, tensions and facilitating strategies were identified. Conclusions The issues raised here should assist researchers in developing research proposals with members of the public. Substantive and methodological directions for further research on the impact of public involvement in research design are set out.