scholarly journals An evaluation of the experiences of young people in Patient and Public Involvement for palliative care research

2021 ◽  
pp. 026921632199930
Author(s):  
Sarah J Mitchell ◽  
Anne-Marie Slowther ◽  
Jane Coad ◽  
Dena Khan ◽  
Mohini Samani ◽  
...  
Keyword(s):  
Palliative Care ◽  
Young People ◽  
Public Involvement ◽  
Research Study ◽  
Patient And Public Involvement ◽  
Subject Area ◽  
Research Network ◽  
Care Research ◽  
Paediatric Palliative Care ◽  
The Impact

Background: The active involvement of patients and the public in the design and conduct of research (Patient and Public Involvement) is important to add relevance and context. There are particular considerations for involving children and young people in research in potentially sensitive and emotional subject areas such as palliative care. Aim: To evaluate the experiences of young people of Patient and Public Involvement for a paediatric palliative care research study. Design: Anonymous written feedback was collected from group members about their experiences of Patient and Public Involvement in a paediatric palliative care research study. An inductive thematic analysis of the feedback was conducted using NVivo. Setting / Participants: Young people aged 12–22 years who were members of existing advisory groups at a children’s hospital, hospice and the clinical research network in the West Midlands, UK. Results: Feedback was provided by 30 young people at three meetings, held between December 2016 and February 2017. Three themes emerged: (1) Involvement: Young people have a desire to be involved in palliative care research, and recognise the importance of the subject area. (2) Impact: Researchers should demonstrate the impact of the involvement work on the research, by regularly providing feedback. (3) Learning: Opportunities to learn both about the topic and about research more widely were valued. Conclusions: Young people want to be involved in palliative care research, and recognise its importance. A continuous relationship with the researcher throughout the study, with clear demonstration of the impact that their input has on the research plans, are important.

scholarly journals Reflective insights from developing a palliative care children and young people’s advisory group

2021 ◽  
pp. 026921632097603
Author(s):  
Anna Roach ◽  
Debbie Braybrook ◽  
Steve Marshall
Keyword(s):  
Palliative Care ◽  
Young People ◽  
Health Research ◽  
School Health ◽  
Public Involvement ◽  
After School ◽  
Advisory Group ◽  
Research Projects ◽  
Children And Young People ◽  
Care Research

Background: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research. Aim: To plan and deliver a Young People’s Advisory Group in palliative care and health research at a secondary school. Findings: Attending an after-school ‘Health and Social Research Methods Club’ for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group. Conclusion: This project has equipped researchers with skills and provided a structured template for future Young People’s Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research.

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

scholarly journals Involving young people in drug and alcohol research

2018 ◽  
Vol 18 (1) ◽  
pp. 28-38 ◽  
Author(s):  
Louca-Mai Brady ◽  
Lorna Templeton ◽  
Paul Toner ◽  
Judith Watson ◽  
David Evans ◽  
...  
Keyword(s):  
Young People ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Advisory Group ◽  
Services Research ◽  
Apparent Contradiction ◽  
Content Type ◽  
Drug Problems ◽  
The Impact ◽  
Drug And Alcohol

Purpose Young people’s involvement should lead to research, and ultimately services, that better reflect young people’s priorities and concerns. Young people with a history of treatment for alcohol and/or drug problems were actively involved in the youth social behaviour and network therapy study. The purpose of this paper is to explore the impact of that involvement on the study and what was learnt about involving young people in drug and alcohol research. Design/methodology/approach The initial plan was to form a young people’s advisory group (YPAG), but when this proved problematic the study explored alternative approaches in collaboration with researchers and young people. Input from 17 young people informed all key elements of the study. Findings Involvement of young people needs to be dynamic and flexible, with sensitivity to their personal experiences. Engagement with services was crucial both in recruiting young people and supporting their ongoing engagement. This research identified a need to critically reflect on the extent to which rhetorics of participation and involvement give rise to effective and meaningful involvement for young service users. It also highlights the need for researchers to be more flexible in response to young people’s personal circumstances, particularly when those young people are “less frequently heard”. Research limitations/implications This research highlights the need for researchers to be more flexible in response to young people’s personal circumstances, particularly when those young people are “less frequently heard”. It highlights the danger of young people in drug and alcohol research being unintentionally disaffected from involvement through conventional approaches and instead suggests ways in which young people could be involved in influencing if and how they participate in research. Practical implications There is an apparent contradiction between dominant discourses and cultures of health services research (including patient and public involvement) that often do not sit easily with ideas of co-production and young people-centred involvement. This paper provides an alternative approach to involvement of young people that can help to enable more meaningful and effective involvement. Originality/value The flexible and young people-centred model for involvement which emerged from this work provides a template for a different approach. This may be particularly useful for those who find current practice, such as YPAG, inaccessible.

scholarly journals ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

2015 ◽  
Vol 3 (38) ◽  
pp. 1-176 ◽  
Author(s):  
Patricia Wilson ◽  
Elspeth Mathie ◽  
Julia Keenan ◽  
Elaine McNeilly ◽  
Claire Goodman ◽  
...  
Keyword(s):  
Case Studies ◽  
Study Design ◽  
Research Team ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Realist Evaluation ◽  
Research Network ◽  
Normalisation Process Theory ◽  
The Impact

BackgroundPatient and public involvement (PPI) is a prerequisite for many funding bodies and NHS research ethics approval. PPI in research is defined as research carried out with or by the public rather than to, about or for them. While the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI in research.ObjectivesTo determine the types of PPI in funded research, describe key processes, analyse the contextual and temporal dynamics of PPI and explore the experience of PPI in research for all those involved. Mechanisms contributing to the routine incorporation of PPI in the research process were assessed, the impact of PPI on research processes and outcomes evaluated, and barriers and enablers to effective PPI identified.DesignA three-staged realist evaluation drawing on Normalisation Process Theory to understand how far PPI was embedded within health-care research in six areas: diabetes mellitus, arthritis, cystic fibrosis, dementia, public health and learning disabilities. The first two stages comprised a scoping exercise and online survey to chief investigators to assess current PPI activity. The third stage consisted of case studies tracked over 18 months through interviews and document analysis. The research was conducted in four regions of England.ParticipantsNon-commercial studies currently running or completed within the previous 2 years eligible for adoption on the UK Clinical Research Network portfolio. A total of 129 case study participants included researchers and PPI representatives from 22 research studies, and representatives from funding bodies and PPI networks.ResultsIn the scoping 51% (n = 92) of studies had evidence of PPI and in the survey 79% (n = 80), with funder requirements and study design the strongest influence on the extent of PPI. There was little transparency about PPI in publicly accessible information. In case studies, context–mechanism–outcome configurations suggested that six salient actions were required for effective PPI. These were a clear purpose, role and structure for PPI; ensuring diversity; whole research team engagement with PPI; mutual understanding and trust between the researchers and lay representatives; ensuring opportunities for PPI throughout the research process; and reflecting on, appraising and evaluating PPI within a research study. PPI models included a ‘one-off’ model with limited PPI, a fully intertwined model in which PPI was fully embedded and an outreach model with lay representatives linking to broader communities. Enabling contexts included funder, topic/design, resources, research host, organisation of PPI and, most importantly, relationships. In some case studies, lack of coherence in defining PPI persisted, with evidence of a dual role of PPI representative/study participant. Evidence of PPI outcomes included changes to study design, improvements to recruitment materials and rates, and dissemination.ConclusionsSix salient actions were required for effective PPI and were characterised by a shared understanding of moral and methodological purposes of PPI, a key individual co-ordinating PPI, ensuring diversity, a research team positive about PPI input and fully engaged with it, based on relationships that were established and maintained over time, and PPI being evaluated in a proactive and systematic approach. Future work recommendations include exploring the impact of virtual PPI, cost analysis and economic evaluation of the different models of PPI, and a longer-term follow-up study of the outcomes of PPI on research findings and impact on services and clinical practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

scholarly journals Ethics and patient and public involvement with children and young people

2018 ◽  
Vol 104 (4) ◽  
pp. 195-200 ◽  
Author(s):  
Sarah Jane Mitchell ◽  
Anne-Marie Slowther ◽  
Jane Coad ◽  
Shazaan Akhtar ◽  
Elizabeth Hyde ◽  
...  
Keyword(s):  
Young People ◽  
Public Involvement ◽  
Ethical Issues ◽  
Healthcare Services ◽  
Patient And Public Involvement ◽  
Ethical Practice ◽  
Application Process ◽  
Children And Young People ◽  
Paediatric Palliative Care ◽  
Ethical Approval

Patient and public involvement (PPI) is important both in research and in quality improvement activities related to healthcare services . While PPI activities do not require formal ethical approval, they can raise a number of ethical concerns, through the introduction of complex technical medical concepts, challenging language or sensitive subject areas. There is very little published literature to guide ethical practice in this area. We have been conducting PPI with children and young people throughout a research study in paediatric palliative care. PPI started during the application process and continued to guide and shape the research as it progressed. Ethical issues can arise at any time in PPI work. Although many can be predicted and planned for, the nature of PPI means that researchers can be presented with ideas and concepts they had not previously considered, requiring reflexivity and a reactive approach. This paper describes how we considered and addressed the potential ethical issues of PPI within our research. The approach that emerged provides a framework that can be adapted to a range of contexts and will be of immediate relevance to researchers and clinicians who are conducting PPI to inform their work.

scholarly journals Children and young people’s contributions to public involvement and engagement activities in health-related research: A scoping review

PLoS ONE ◽  
2021 ◽  
Vol 16 (6) ◽  
pp. e0252774
Author(s):  
Alison Rouncefield-Swales ◽  
Jane Harris ◽  
Bernie Carter ◽  
Lucy Bray ◽  
Toni Bewley ◽  
...  
Keyword(s):  
Young People ◽  
Scoping Review ◽  
Health Research ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Children And Young People ◽  
Related Research ◽  
Health Related Research ◽  
Health Related ◽  
The Impact

Background There has been an increasing interest in how children and young people can be involved in patient and public involvement and engagement (PPIE) in health research. However, relatively little robust evidence exists about which children and young people are reported as being involved or excluded from PPIE; the methods reported as being used to involve them in PPIE; and the reasons presented for their involvement in PPIE and what happens as a result. We performed a scoping review to identify, synthesise and present what is known from the literature about patient and public involvement and engagement activities with children and young people in health related research. Methods Relevant studies were identified by searches in Scopus, Medline, CINAHL, Cochrane and PsychInfo databases, and hand checking of reference lists and grey literature. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was used as a framework to collate the data. Two reviewers independently screened articles and decisions were consensually made. Main findings A total of 9805 references were identified (after duplicates were removed) through the literature search, of which 233 full-text articles were assessed for eligibility. Forty studies published between 2000 and 2019 were included in the review. The review reveals ambiguities in the quality of reporting of PPIE with children with clear reporting on demographics and health conditions. The review found that children and young people were commonly involved in multiple stages of research but there was also significant variation in the level at which children and young people were involved in PPIE. Evaluation of the impact of children and young people’s involvement in PPIE was limited. Conclusions Consultation, engagement and participation can all offer children and young people worthwhile ways of contributing to research with the level, purpose and impact of involvement determined by the children and young people themselves. However, careful decisions need to be made to ensure that it is suited to the context, setting and focus so that the desired PPIE impacts are achieved. Improvements should be made to the evaluation and reporting of PPIE in research. This will help researchers and funders to better understand the benefits, challenges and impact of PPIE with children and young people on health research.

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