scholarly journals Patient and Public Involvement of young people with a chronic condition in projects in health and social care: A scoping review

2020 ◽  
Vol 23 (4) ◽  
pp. 789-801 ◽  
Author(s):  
Femke Schelven ◽  
Hennie Boeije ◽  
Veerle Mariën ◽  
Jany Rademakers
Keyword(s):  
Young People ◽  
Scoping Review ◽  
Chronic Condition ◽  
Public Involvement ◽  
Social Care ◽  
Patient And Public Involvement ◽  
Health And Social Care

scholarly journals Patient and public involvement (PPI) in prisons: the involvement of people living in prison in the research process – a systematic scoping review

2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Samantha Treacy ◽  
Steven Martin ◽  
Nelum Samarutilake ◽  
Tine Van Bortel
Keyword(s):  
Systematic Review ◽  
Scoping Review ◽  
Public Involvement ◽  
Social Care ◽  
Positive Impact ◽  
Research Process ◽  
Evidence Base ◽  
Patient And Public Involvement ◽  
Care Research ◽  
Health And Social Care

Abstract Background Patient and Public Involvement (PPI) in health and social care research is increasingly prevalent and is promoted in policy as a means of improving the validity of research. This also applies to people living in prison and using social care services. Whilst evidence for the effectiveness of PPI was limited and reviews of its application in prisons were not found, the infancy of the evidence base and moral and ethical reasons for involvement mean that PPI continues to be advocated in the community and in prisons. Objectives To conduct a review of the literature regarding the involvement of people or persons living in prison (PLiP) in health and social care research focused on: (i) aims; (ii) types of involvement; (iii) evaluations and findings; (iv) barriers and solutions; and (v) feasibility of undertaking a systematic review. Methods A systematic scoping review was undertaken following Arksey and O’Malley’s (International Journal of Social Research Methodology 8: 19-32, 2005) five-stage framework. A comprehensive search was conducted involving ten electronic databases up until December 2020 using patient involvement and context related search terms. A review-specific spreadsheet was created following the PICO formula, and a narrative synthesis approach was taken to answer the research questions. PRISMA guidelines were followed in reporting. Results 39 papers were selected for inclusion in the review. The majority of these took a ‘participatory’ approach to prisoner involvement, which occurred at most stages during the research process except for more ‘higher’ level research operations (funding applications and project management), and only one study was led by PLiPs. Few studies involved an evaluation of the involvement of PLiP, and this was mostly PLiP or researcher reflections without formal or independent analysis, and largely reported a positive impact. Barriers to the involvement of PLiP coalesced around power differences and prison bureaucracy. Conclusion Given the very high risk of bias arising from the available ‘evaluations’, it was not possible to derive firm conclusions about the effectiveness of PLiP involvement in the research process. In addition, given the state of the evidence base, it was felt that a systematic review would not be feasible until more evaluations were undertaken using a range of methodologies to develop the field further.

scholarly journals Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
Femke van Schelven ◽  
Eline van der Meulen ◽  
Noortje Kroeze ◽  
Marjolijn Ketelaar ◽  
Hennie Boeije
Keyword(s):  
Young People ◽  
Chronic Condition ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
English Summary ◽  
Lessons Learned ◽  
Project Teams ◽  
Data Sources ◽  
Future Prospects ◽  
Roles And Responsibilities

Plain English summary Background Young people with a chronic condition are increasingly involved in doing research and developing tools and interventions that concern them. Working together with patients is called Patient and Public Involvement (PPI). We know from the literature that PPI with young people with a chronic condition can be challenging. Therefore, it is important that everyone shares their lessons learned from doing PPI. Aim We want to share our lessons learned from a large program, called Care and Future Prospects. This program helps young people with a chronic condition to, for example, go to school or to find a job. It funded numerous projects that could contribute to this. In all projects, project teams collaborated with young people with a chronic condition. What did we do We asked young people with a chronic condition and project teams about their experiences with PPI. Project teams wrote reports, were interviewed, and filled out a tool called the Involvement Matrix. Young people filled out a questionnaire. Findings In the article, we present our lessons learned. Examples are: it is important to involve young people with a chronic condition from the start of a project and everyone involved in a project should continuously discuss their responsibilities. We provide practical tips on how young people with a chronic condition and project teams can do this. A tip for young people is, for example: ‘discuss with the project team what you can and want to do and what you need’. An example of a tip for project teams is: ‘Take time to listen attentively to the ideas of young people’. Abstract Background The Patient and Public Involvement (PPI) of young people with a chronic condition receives increasing attention in policy and practice. This is, however, not without its challenges. Consequently, calls have been made to share lessons learned during PPI practice. Methods We share our lessons learned from a large participatory program, called Care and Future Prospects. This program aims to improve the social position of young people aged 0–25 with a physical or mental chronic condition by funding participatory projects. We have drawn our lessons from 33 of these projects, using four data sources. One data source provided information from the perspective of young people with a chronic condition, i.e. questionnaires. Three data sources contained information from the perspectives of project teams, i.e. project reports, case studies of projects and Involvement Matrices. For most of the projects, we have information from multiple data sources. Results We have combined the findings derived from all four data sources. This resulted in multiple lessons learned about PPI with young people with a chronic condition. Those lessons are divided into six themes, including practicalities to take into account at the start, involvement from the start, roles and responsibilities, support, flexibility and an open mind, and evaluation of process and outcomes. Conclusions The lessons learned have taught us that meaningful PPI requires effort, time and resources from both young people and project teams, from the beginning to the end. It is important to continuously discuss roles and responsibilities, and whether these still meet everyone’s needs and wishes. Our study adds to previous research by providing practical examples of encountered challenges and how to deal with them. Moreover, the practical tips can be a valuable aid by showing young people and project teams what concrete actions can support a successful PPI process.

scholarly journals Exploring disconnected discourses about Patient and Public Involvement and Volunteer Involvement in English health and social care

2020 ◽  
Author(s):  
Jurgen Grotz ◽  
Linda Birt ◽  
Heather Edwards ◽  
Michael Locke ◽  
Fiona Poland
Keyword(s):  
Public Involvement ◽  
Social Care ◽  
Patient And Public Involvement ◽  
Health And Social Care

scholarly journals Mapping the impact of patient and public involvement on health and social care research: a systematic review

2012 ◽  
Vol 17 (5) ◽  
pp. 637-650 ◽  
Author(s):  
Jo Brett ◽  
Sophie Staniszewska ◽  
Carole Mockford ◽  
Sandra Herron-Marx ◽  
John Hughes ◽  
...  
Keyword(s):  
Systematic Review ◽  
Public Involvement ◽  
Social Care ◽  
Patient And Public Involvement ◽  
Care Research ◽  
Health And Social Care ◽  
The Impact

Blowin’ in the wind: The involvement of people who use services, carers and the public in health and social care

2016 ◽  
Author(s):  
Karen Newbigging
Keyword(s):  
Public Involvement ◽  
Social Care ◽  
Patient And Public Involvement ◽  
Democratic Deficit ◽  
The Public ◽  
Health And Social Care ◽  
Rapid Diversification

Patient and public involvement (PPI) is often framed in terms of addressing the democratic deficit in the NHS but in England, since 2000, it has become increasingly aligned with the reform of the NHS to become patient centred by enabling people to exercise choice as a right and responsibility across all aspects of healthcare. Since then, there has been a rapid diversification of approaches to and methods for PPI, which experienced organisational turbulence under the Labour administration. This chapter discusses the evolution of PPI in England before 2010, and it examines the Coalition’s reforms of PPI, and the implications of these reforms.

scholarly journals PATIENT AND PUBLIC INVOLVEMENT IN HEALTH AND SOCIAL CARE IN ENGLAND

2014 ◽  
Vol 8 (4) ◽  
pp. 39-41
Author(s):  
Jane Randall-Smith ◽  
Catherine Pritchard
Keyword(s):  
Public Involvement ◽  
Social Care ◽  
Care Service ◽  
Local Area ◽  
Patient And Public Involvement ◽  
Consumer Participation ◽  
Social Care Service ◽  
Care Services ◽  
Statutory Authority ◽  
Health And Social Care

Signifcant changes were brought about in health and social care in England in 2013, as a result of the Health and Social Care Act 2012. As part of the changes in 2013, a network of local Healthwatch organisations was set up to act as the people’s champion for health and social care in their local area. Healthwatch Shropshire is one of these local Healthwatch. It gathers experiences and opinions from patients, carers, service users and the wider public about publicly funded health and social care services and uses this information to infuence health and social care service delivery. Healthwatch Shropshire also recruits and trains volunteers to support its work, in particular, specially trained volunteers visit locations where health and social care services are provided and report on their fndings. Healthwatch Shropshire also has information and signposting services, provides volunteering opportunities, and has a statutory authority to visit locations where health and social care services are being delivered.Keywords: patient participation, consumer participation, public opinion

scholarly journals Impacts of older people’s patient and public involvement in health and social care research: a systematic review

2018 ◽  
Vol 47 (6) ◽  
pp. 801-809 ◽  
Author(s):  
Jennifer N Baldwin ◽  
Sara Napier ◽  
Stephen Neville ◽  
Valerie A Wright-St Clair
Keyword(s):  
Systematic Review ◽  
Public Involvement ◽  
Social Care ◽  
Patient And Public Involvement ◽  
Care Research ◽  
Health And Social Care

Developing the evidence base of patient and public involvement in health and social care research: the case for measuring impact

2011 ◽  
Vol 35 (6) ◽  
pp. 628-632 ◽  
Author(s):  
Sophie Staniszewska ◽  
Ade Adebajo ◽  
Rosemary Barber ◽  
Peter Beresford ◽  
Louca-Mai Brady ◽  
...  
Keyword(s):  
Public Involvement ◽  
Social Care ◽  
Evidence Base ◽  
Patient And Public Involvement ◽  
Care Research ◽  
Health And Social Care

scholarly journals Involving public and patients in research

2014 ◽  
Vol 96 (5) ◽  
pp. 148-149 ◽  
Author(s):  
V Kasivisvanathan ◽  
Kate Williams
Keyword(s):  
Health Research ◽  
Public Involvement ◽  
Social Care ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Care Services ◽  
Health And Social Care

What does patient and public involvement (PPI) in research mean? The National Institute for Health Research (NIHR) defines ‘patient and public’ as patients, potential patients, their carers, people who use health and social care services, and organisations that represent people who use these services. 1 The term ‘involvement’ refers to an active partnership between patients and public and researchers in the research process.

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