Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research

Background: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness. Aim: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement. Design: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers. Setting/participants: Researchers and public members from a palliative care and rehabilitation research institute, UK. Results: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the ‘right’ people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the ‘right’ people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects. Conclusion: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.

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Patient and Public Involvement in Palliative Care Research

10.26226/morressier.5c76c8b7e2ea5a723761228f ◽

2019 ◽

Author(s):

Clare Gardiner

Keyword(s):

Palliative Care ◽

Public Involvement ◽

Patient And Public Involvement ◽

Care Research

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Mixed-methods study protocol: do national reporting and learning system medication incidents in palliative care reflect patient and carer concerns about medication management and safety?

BMJ Open ◽

10.1136/bmjopen-2021-048696 ◽

2021 ◽

Vol 11 (9) ◽

pp. e048696

Author(s):

Sarah Yardley ◽

Sally-Anne Francis ◽

Antony Chuter ◽

Stuart Hellard ◽

Julia Abernethy ◽

...

Keyword(s):

Palliative Care ◽

Patient Safety ◽

Professional Learning ◽

Public Involvement ◽

Medication Management ◽

Patient And Public Involvement ◽

Learning System ◽

Mixed Methods Study ◽

Professional Perspectives ◽

Medication Incidents

IntroductionApproximately 20% of serious safety incidents involving palliative patients relate to medication. These are disproportionately reported when patients are in their usual residence when compared with hospital or hospice. While patient safety incident reporting systems can support professional learning, it is unclear whether these reports encompass patient and carer concerns with palliative medications or interpersonal safety.AimTo explore and compare perceptions of (un)safe palliative medication management from patient, carer and professional perspectives in community, hospital and hospice settings.Methods and analysisWe will use an innovative mixed-methods study design combining systematic review searching techniques with cross-sectional quantitative descriptive analysis and interpretative qualitative metasynthesis to integrate three elements: (1) Scoping review: multiple database searches for empirical studies and first-hand experiences in English (no other restrictions) to establish how patients and informal carers conceptualise safety in palliative medication management. (2)Medication incidents from the England and Wales National Reporting and Learning System: identifying and characterising reports to understand professional perspectives on suboptimal palliative medication management. (3) Comparison of 1 and 2: contextualising with stakeholder perspectives.Patient and public involvementOur team includes a funded patient and public involvement (PPI) collaborator, with experience of promoting patient-centred approaches in patient safety research. Funded discussion and dissemination events with PPI and healthcare (clinical and policy) professionals are planned.Ethics and disseminationProspective ethical approval granted: Cardiff University School of Medicine Research Ethics Committee (Ref 19/28). Our study will synthesise multivoiced constructions of patient safety in palliative care to identify implications for professional learning and actions that are relevant across health and social care. It will also identify changing or escalating patterns in palliative medication incidents due to the COVID-19 pandemic. Peer-reviewed publications, academic presentations, plain English summaries, press releases and social media will be used to disseminate to the public, researchers, clinicians and policy-makers.

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PATIENT AND PUBLIC INVOLVEMENT IN SCOPE DEVELOPMENT FOR A PALLIATIVE CARE HEALTH TECHNOLOGY ASSESSMENT IN EUROPE

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2014-000654.113 ◽

2014 ◽

Vol 4 (Suppl 1) ◽

pp. A40.3-A41 ◽

Cited By ~ 1

Author(s):

Louise Brereton ◽

Elizabeth Goyder ◽

Christine Ingleton ◽

Clare Gardiner ◽

Jim Chilcott ◽

...

Keyword(s):

Palliative Care ◽

Health Technology Assessment ◽

Technology Assessment ◽

Public Involvement ◽

Health Technology ◽

Patient And Public Involvement ◽

Care Health

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G526(P) The experience of young people in patient and public involvement for palliative care research

10.1136/archdischild-2017-313087.518 ◽

2017 ◽

Author(s):

S Mitchell ◽

A Syed ◽

M Seaborn ◽

M Samani ◽

A Slowther ◽

...

Keyword(s):

Palliative Care ◽

Young People ◽

Public Involvement ◽

Patient And Public Involvement ◽

Care Research

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

Palliative Medicine ◽

10.1177/0269216321999301 ◽

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.

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