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

被引：13

作者：

Brighton L.J. ^{[1
]}

Pask S. ^{[1
]}

Benalia H. ^{[1
]}

Bailey S. ^{[2
]}

Sumerfield M. ^{[2
]}

Witt J. ^{[3
]}

de Wolf-Linder S. ^{[1
,4
]}

Etkind S.N. ^{[1
]}

Murtagh F.E.M. ^{[1
,5
]}

Koffman J. ^{[1
]}

Evans C.J. ^{[1
,6
]}

机构：

[1] Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London, Bessemer Road, London

[2] Patient/Carer Representative, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London, London

[3] Cancer Research UK, Angel Building, 407 St John Street, London

[4] Zurich University of Applied Sciences, School of Health Professions, Institute of Nursing, Winterthur

[5] Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull

[6] Sussex Community NHS Foundation Trust, Trust HQ Brighton General Hospital, Elm Gove, Brighton

来源：

Research Involvement and Engagement | / 4卷 / 1期

基金：

英国惠康基金;

关键词：

Online forum; Online systems; Palliative care; Patient and public involvement; Patient engagement; Patient participation; Rehabilitation; Service user involvement;

D O I：

10.1186/s40900-018-0097-z

中图分类号：

学科分类号：

摘要：

Background: Patient and public involvement (PPI) in research is increasingly recognised as important. Most PPI activities take place face-to-face, yet this can be difficult for people with ill health or caring responsibilities, and may exclude people from hard-to-reach populations (e.g. living in vulnerable social circumstances and/or remote geographical locations). These challenges are particularly pertinent in palliative care and rehabilitation research where people often live with, or care for someone with, advanced illness. In response to this, we aimed to test the functionality, feasibility, and acceptability of an online forum for PPI for palliative care and rehabilitation research (www.csipublicinvolvement.co.uk). Methods: We conducted separate focus groups with PPI members and researchers who had used the online forum. Data collection was underpinned by DeLone and McLean’s model of information systems success. Focus groups were recorded, transcribed, and analysed using inductive thematic analysis. Dual coding by two authors ensured rigour, and attention was paid to divergent cases. Results: Four PPI members and five researchers participated in the focus groups (two PPI focus groups, one researcher focus group). The online forum was perceived as functional, feasible, and acceptable. Our analysis identified four key questions to consider when developing online methods for PPI: (1) how does the forum work, (2) how does it engage people, (3) how does it empower people, and (4) what is the impact? PPI members felt that the online forum was too researcher led, and needed to be more PPI focussed. Conclusions: When developing online methods of PPI, a functioning forum is not enough: It also needs to be engaging and empowering to have an impact. To optimise online involvement, future work should refer to these four domains and balance the needs of researchers and PPI members. © The Author(s).

引用

共 36 条

[1]

Patient and Public Involvement Policy, (2013)

[2]

What is Public Involvement in Research?, (2014)

[3]

Making Shared Decision-Making a Reality: No Decision about Me, without Me, (2011)

[4]

Best S., Et al., The palliative and end of life care priority setting partnership (PEoLC PSP): Determining evidence uncertainties from the perspective of the end user of research. BMJ Support. Palliat, Care, 4, (2014)

[5]

Hewlett S., Et al., Patients and professionals as research partners: Challenges, practicalities, and benefits, Arthritis Care Res, 55, 4, pp. 676-680, (2006)

[6]

Noble B., Buckle P., Gadd B., Service user and patient and public involvement in palliative and supportive care research, BMJ Support Palliat Care, 5, 5, pp. 459-460, (2015)

[7]

Froggatt K., Preston N., Turner M., Et al., Patient and public involvement in research and the Cancer Experiences Collaborative: Benefits and challenges, BMJ Support Palliat Care, 5, pp. 518-521, (2015)

[8]

WHO Definition of Palliative Care. Retrieved From

[9]

Rehabilitation in Health Systems

[10]

Higginson I., Et al., Evaluating complex interventions in end of life care: The MORECare statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews, BMC Med, 11, 1, (2013)

← 1 2 3 4 →