A scoping review of patient and public perspectives on cell and gene therapies

2021 ◽  
Author(s):  
Karen Macpherson ◽  
Olalekan Lee Aiyegbusi ◽  
Lauren Elston ◽  
Susan Myles ◽  
Jennifer Washington ◽  
...  
Keyword(s):  
Qualitative Research ◽  
Scoping Review ◽  
Future Research ◽  
Public Knowledge ◽  
Research Education ◽  
The Public ◽  
Economic Issues ◽  
Gene Therapies ◽  
General Acceptance ◽  
Public Perspectives

Aim: The development and introduction of cell and gene therapies presents complex social and economic issues. Fully addressing these challenges requires engagement with patients and the public. Materials & methods: A systematically conducted scoping review was undertaken to gauge current patient and public knowledge and perspectives, and as such inform requirements for future research, education and engagement activities. Results: A heterogeneous collection of 35 studies were identified. Levels of knowledge among patients and the public were extremely variable. Studies indicated general acceptance of therapies. Conclusion: The review identified the need for tailored educational activities, and in particular the importance of addressing misconceptions. There is also a need for robust qualitative research considering perspectives on current and forthcoming licensed therapies.

Public reassurance following a collective trauma event: a scoping review of the evidence to inform police practice

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Lyndal Hickey ◽  
Louise Hams ◽  
Lauren Kosta
Keyword(s):  
Scoping Review ◽  
Negative Impact ◽  
Traumatic Events ◽  
Future Research ◽  
Collective Trauma ◽  
Content Type ◽  
Community Attitudes ◽  
The Public ◽  
Police Agencies ◽  
The Impact

PurposeThis paper examines the empirical research on police reassurance following a collective trauma event (CTE).Design/methodology/approachUsing a scoping review methodology, this paper sought to establish the extent, range and nature of published literature on policing responses to collective traumatic events, and to identify key features of this form of direct practice. Included papers needed to focus on police responses oeassurance with the public related to events (pre-or post) that could be regarded as collective trauma events by nature or scale. Searches were conducted using the Web of Science, SCOPUS and PsychINFO databases for literature published between January 2000 and December 2019.FindingsFourteen articles met the inclusion criteria. The key themes identified: (1) measuring the impact of reassurance and community policing; (2) community attitudes to policing and social disorder/critical events; (3) police workforce responses to traumatic events; and (4) interventions to support police to respond to their community.Research limitations/implicationsFuture research needs to examine the elements that create a robust organisational infrastructure that can withstand the demands of policing in ordinary and extraordinary times. Fundamental to the studies in this review is the relationship between the police agencies and the community. The nature of this relationship and how it can be strengthened to ameliorate the negative impact of CTEs in communities needs further exploration.Originality/valueThis paper provides important findings that can inform future reassurance policing practice and research.

Working with Restrictions: A Scoping Review of Social Work and Human Service Practice with People Seeking Asylum in the Global North

2020 ◽  
Author(s):  
Rebecca Soraya Field ◽  
Donna Chung ◽  
Caroline Fleay
Keyword(s):  
Qualitative Research ◽  
Social Work ◽  
Scoping Review ◽  
Human Service ◽  
Human Services ◽  
Future Research ◽  
Refugee Status ◽  
Strength Based ◽  
Global North ◽  
Restrictive Policy

Abstract With a record number of people reported to be forcibly displaced worldwide and an increasingly anti-asylum policy environment in Global North host nations, it is critical to examine social work and human services with people seeking asylum and people with refugee status. This scoping review sought to identify and review the existing qualitative research on such practice from the perspectives of social work and human service practitioners, people seeking asylum and people with refugee status and clients in Global North host nations. The review presents the key findings and trends emerging from twenty publications and identifies areas for future research to further develop knowledge of this field of practice as there is a dearth of research on this topic. Through thematic analysis of very different publications, it was found that Global North host nations have varying forms of restrictive policy and dominant anti-asylum discourses. This and other factors result in many potential areas for improvement of social work and human services. The findings include recommendations for more inclusive and compassionate policy, person-centred and strength-based practice approaches, and further qualitative research with people seeking asylum.

scholarly journals Patient and public perspectives on cell and gene therapies: a systematic review

2020 ◽  
Vol 11 (1) ◽  
Author(s):  
Olalekan Lee Aiyegbusi ◽  
Karen Macpherson ◽  
Lauren Elston ◽  
Susan Myles ◽  
Jennifer Washington ◽  
...  
Keyword(s):  
Systematic Review ◽  
Information Needs ◽  
Current Evidence ◽  
Future Research ◽  
Sources Of Information ◽  
Social Challenges ◽  
Research Education ◽  
Gene Therapies ◽  
Education And Awareness ◽  
Cell And Gene Therapy

AbstractCell and gene therapies offer opportunities for treating disease with potential to restore function, and cure disease. However, they are not without risk and pose complex logistical, economic, ethical and social challenges for health systems. Here we report our systematic review of the current evidence on patient and public knowledge and perspectives of cell and gene therapies, to inform future research, education and awareness raising activities. We screened 10,735 titles and abstracts, and evaluated the full texts of 151 publications. The final selection was 35 publications. Four themes were generated from the narrative synthesis of the study findings namely: (1) Knowledge and understanding of cell and gene therapies, (2) Acceptance of cell and gene therapies (3) Understanding of risk and benefits of therapy, and (4) Information needs and current sources of information. As potential funders or future recipients, it is important that the public and patients are aware of these therapies, understand the issues involved, and can contribute to the debate. This review highlights the need for appropriate patient and public education on the various aspects of cell and gene therapies. High quality studies exploring patient and public opinions and experiences of cell and gene therapy are required. Patient and public perceptions of these therapies, alongside evidence of clinical and cost-effectiveness, will be central to their uptake and use.

scholarly journals Presentation And Function Of The Javanese Song For The Choir In Eucharist Ceremony At St. Maria Fatima Banyumanik Semarang

2020 ◽  
Vol 9 (1) ◽  
pp. 11-20
Author(s):  
Ignatius Christo Charity ◽  
Totok Sumaryanto Florentinus ◽  
Eko Raharjo
Keyword(s):  
Qualitative Research ◽  
Catholic Church ◽  
Public Knowledge ◽  
Research Subjects ◽  
The Public ◽  
Interactive Analysis ◽  
The People ◽  
Analysis Technique ◽  
And Function ◽  
The Church

Eucharistic celebrations that use Javanese language are very rarely carried out in the Catholic church, thereby causing a lack of public knowledge, especially people about Javanese Eucharist. This research was conducted aiming to provide information and knowledge to the public about the form and presentation of the Javanese song for the choir used to accompany the celebration of the Javanese eucharist held at the church St. Maria Fatima Banyumanik Semarang. This descriptive - qualitative research took place at St. Maria Fatima Banyumanik Semarang on May 26 and June 30, 2019 with a priest, choir officer and church members as research subjects. Data collection techniques in this study include observation, interviews and document studies. The data analysis technique used is interactive analysis. The results of the study revealed that the form of Javanese liturgical song presentation was used to accompany the celebration of the Javanese eucharist at the Church of St. Maria Fatima Banyumanik Semarang is the same as the form of presentation of the liturgical celebration of the Eucharist in general, in the form of a choir group, and the function of the use of Javanese liturgical songs in the celebration of the eucharist is as a means of communication and as a continuous contribution and cultural stability. Hopefully in the future the church will more intensively inform the celebration of the Javanese eucharist to the people, and hopefully the choir in charge can prepare song texts for the people, so as to increase the readiness and enthusiasm of the people in participating in the celebration of the Javanese eucharist at St. Maria Fatima Banyumanik Semarang.                                     

scholarly journals Post-traumatic growth after cancer: a scoping review of qualitative research

2021 ◽  
Author(s):  
Fiona Menger ◽  
Nurul Asyiqin Mohammed Halim ◽  
Ben Rimmer ◽  
Linda Sharp
Keyword(s):  
Qualitative Research ◽  
Health Behaviour ◽  
Scoping Review ◽  
Future Research ◽  
Valuable Insight ◽  
Positive Health ◽  
Post Traumatic Growth ◽  
Post Traumatic ◽  
After Cancer ◽  
Behaviour Changes

Abstract Purpose Interest is growing in post-traumatic growth (PTG) after cancer prompted, in part, by observations of positive associations with health-related quality of life. Qualitative research provides valuable insight into survivors’ experiences. We conducted a scoping review of qualitative evidence on PTG in cancer, determining the number, nature, range and scope of studies, and gaps in the literature. Methods We systematically searched Medline, Scopus, CINAHL, Web of Science, and PsycINFO for qualitative research exploring positive changes after cancer published from 1996. From eligible studies, we extracted: terms used for PTG; design, methodological orientation, and techniques, and participant characteristics. Using descriptive mapping, we explored whether study findings fit within Tedeschi and Calhoun’s PTG framework, and evidence for unique positive changes post-cancer. Results Twenty-eight studies were eligible. Cancer sites included were: breast, 14; mixed, 6; haematological, 4; head and neck cancer, 2; bone, 1, and testis, 1. Multiple studies were conducted in: the USA (12), Australia (3), Iran (2), and the UK (2). Twenty-three studies collected data using individual interviews (21) or focus groups (2). Definitions of PTG varied. Studies largely focused on descriptive accounts of PTG. Findings mapped onto existing PTG dimensions; health behaviour changes were often reported, under ‘new possibilities’. Conclusions A range of PTG outcomes can occur after cancer. Positive health behaviour changes warrant further exploration. Future research should include more diverse patient populations, collect longitudinal data, and focus on pathways towards positive changes.

scholarly journals Promotion of Worker’s Health in Qualitative Research Approaches: A Scoping Review

2020 ◽  
Author(s):  
Gerferson André Silva Costa ◽  
Fabiana Goulart de Oliveira ◽  
Celina Maria Modena
Keyword(s):  
Qualitative Research ◽  
Health Promotion ◽  
Working Conditions ◽  
Scoping Review ◽  
Workplace Health Promotion ◽  
Organizational Level ◽  
Future Research ◽  
Present Moment ◽  
Individual Level ◽  
The Individual

Abstract BackgroundIt is known that the investment in promoting health, both at the individual level and at the organizational level can bring benefits to all individuals included in this process. This Scoping Review compares the main results addressed in Brazilian qualitative researches and in other countries that addressed the topic of workers’ health promotion.Methods Thirty-three articles were selected for analysis from the SciELO, BVS - BDENF/Index, PubMed, and LILACS databases. Scientific articles that used a qualitative or quantitative-qualitative approach in Portuguese, English or Spanish, during the period from 2009 to the present moment of our Review (October 2019) were included. This Scoping Review was guided by Arksey and O’Malley’s framework.Results The literature review allowed the discussion on the following related topics: worker’s social participation in health decisions, perceptions/meanings about health promotion, working conditions and worker’s suffering, working conditions and the risk of illness, worker’s awareness, and changes in lifestyles, employers’ stereotypes about their workers and health promotion, the use of technology in health promotion interventions, the importance of communication in promoting workers’ health and social support at work for carrying out health promotion actions.ConclusionThis study showed differences in the research analyzed and provided the mapping of the main results that may support future research and changes in worker’s health policies in general. While in Brazil, studies are still focused on workers’ perceptions about health promotion and the assessment of working conditions risks to their health, in other countries, most qualitative research has been used to assess workers’ perceptions after a given workplace health promotion intervention.

Annotating and linking in the Open Journal Systems

First Monday ◽  
2007 ◽  
Author(s):  
Rick Kopak ◽  
Chia-Ning Chiang
Keyword(s):  
Qualitative Data ◽  
Future Research ◽  
Public Knowledge ◽  
The Public ◽  
Open Journal Systems

This study reports on user based research on the annotating and linking prototype components of the Open Journals Systems of the Public Knowledge Project. The study describes the features of the components and provides results based on an analysis of both quantitative and qualitative data. The paper concludes by stating design implications of the research, and outlines future research based on development of the prototype.

Public libraries and the social web: a review and analysis of the existing literature

2019 ◽  
Vol 76 (1) ◽  
pp. 197-211 ◽  
Author(s):  
Namjoo Choi ◽  
Lindsey M. Harper
Keyword(s):  
Public Libraries ◽  
Public Library ◽  
Future Research ◽  
Library Services ◽  
Social Web ◽  
Content Type ◽  
The Public ◽  
General Acceptance ◽  
Literature Searches ◽  
The Social

Purpose The purpose of this paper is to update Carlsson (2015), which examined the research on public libraries and the social web published from 2006 to 2012, and it also intends to go beyond Carlsson (2015) by including six additional variables. Design/methodology/approach Literature searches were performed against Web of Science Core Collection and EBSCOhost databases. By adapting Carlsson’s (2015) three level key phrase searches, which were then complemented by chain searching, a total of 60 articles were identified and analyzed. Findings In comparison to Carlsson (2015), this study shows that the recent research, published between 2012 and 2018, leans toward a more general acceptance of the social web’s usage to improve the services provided by public libraries; that the public library is rarely premised to be in a state of crisis; and that the social web is mostly perceived as having a complementary relationship with librarianship and library services. The findings from analyzing the six additional variables are also presented. Research limitations/implications The findings from this study provide LIS professionals a greater understanding of where the research stands on the topic at present, and this study also identifies gaps in the literature to offer insight into the areas where future research can be directed. Originality/value Given the continued popularity of social web usage among public libraries, this study examines the literature published on the social web in the public library context between 2012 and 2018 and offers implications and future research suggestions.

scholarly journals Predictors of future research interest among allied health professionals at a regional tertiary hospital

2020 ◽  
Vol 21 (3) ◽  
pp. 78-92
Author(s):  
Tilley Pain ◽  
Daniel Lindsay ◽  
Malindu Fernando
Keyword(s):  
Qualitative Research ◽  
Graduate Education ◽  
Health Professionals ◽  
Allied Health ◽  
Research Topic ◽  
Research Interest ◽  
Future Research ◽  
Research Experience ◽  
Allied Health Professionals ◽  
Research Education

Introduction: Allied health professionals (AHPs) are core service providers in acute healthcare. AHPs’ career trajectory may be via post-graduate education in clinical, management or research higher degrees. However, little is known of AHP post-graduate education and future research aspirations. This study calculates predictors of future research interest of AHPs at a regional Australian hospital.Methods: A cross-sectional electronic survey was sent to all AHPs working for the Townsville Hospital Health Service from October 2014 until March 2015. The survey collected information about past, current and future education and research motivating factors. Data was analysed using SPSS (Version 24, IBM Corp, USA). Univariate and multivariate binomial logistic regression analyses were performed with future research interest as the outcome variable. Free-text responses were analysed with content analysis.Results: Most AHPs (56%) indicated they were interested in research in the future. The significant predictors of an increased likelihood of future research interest in our study cohort were prior master’s or PhD qualification (OR: 4; 95% CI: 1.1–15.6), fewer years since graduation (OR: 0.6, 95% CI: 0.2–1.9), attending research education (OR: 2.9; 95% CI: 1.3–6.6), having a research topic (OR: 4.9; 95% CI: 1.9–13.9) and prior qualitative research experience (OR: 2.4; 95% CI: 1.1–5.5).Discussion:The predictive factors for future research quantifies allied health research interest for the first time. AHPs in clinical roles within hospital and health services have the potential to derive research questions from ground level clinical practice. Therefore, universities, hospital and health services and policymakers could exploit these predictive factors and strengthen their focus on supporting AHPs’ research education at the level of developing research questions.Conclusion: Predictors of future allied health research interest included having a research topic, having a master’s or PhD qualification, fewer years since graduation and having prior research education or prior qualitative research experience.

scholarly journals Key stakeholders’ perspectives and experiences with defining, identifying and displaying gaps in health research: a qualitative study protocol

BMJ Open ◽  
2019 ◽  
Vol 9 (8) ◽  
pp. e027926
Author(s):  
Linda Nyanchoka ◽  
Catrin Tudur-Smith ◽  
Raphaël Porcher ◽  
Darko Hren
Keyword(s):  
Qualitative Study ◽  
Scoping Review ◽  
Health Research ◽  
Future Research ◽  
Research Practice ◽  
Research Gaps ◽  
Research On Research ◽  
The Public ◽  
The Status ◽  
Qualitative Data Analysis Software

IntroductionIdentifying research gaps can inform the design and conduct of health research, practice and policies by informing the current body of evidence. Audiences including researchers, clinical guideline developers, clinicians, policymakers, research regulatory bodies, funders and patients/the public can also benefit from understanding the status of research and research gaps to make informed choices. This study aims to explore how key informants define research gaps and characterise methods/practices used to identify and display gaps in health research to inform future research practice and policies.Methods and analysisThis is an exploratory qualitative study using semi-structured in-depth interviews. The participants will be recruited by purposive sampling from initiatives and organisations previously identified in a scoping review on methods to identify, prioritise and display gaps in health research. We anticipate performing up to 28 interviews with the different key informant groups who are involved in using evidence to inform health policy, practice and research. Interviews will be thematically analysed as outlined by Braun and Clarke. The qualitative data-analysis software NVivo V.12 Pro will be used to aid data management and analysis.DiscussionThis is the protocol for a follow-up study that aims to complement and enrich the findings of the scoping review on methods to identify, prioritise and display gaps in health research. The overall project aims to develop methodological guidance for describing, identifying and displaying gaps in health research.Ethics and disseminationThe research obtained ethical approval from the University of Liverpool, UK. The findings will be disseminated via conferences, meetings (organised by the Methods in Research on Research project), peer-reviewed publications and lay magazines because the study participants will include the public/patients.

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