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Exploring patient and public involvement in stroke research: a qualitative study.
Disabil Rehabil. 2015; 37(23):2174-83.DR

Abstract

PURPOSE

To explore the experiences of patients and carers involved in patient and public involvement (PPI) activities for stroke research.

METHODS

Semi-structured interviews conducted with stroke survivors and carers (n = 11) were analysed using thematic analysis.

RESULTS

Four key themes emerged: impact of PPI on the individual and the research process, credibility and expertise, level of involvement and barriers and facilitators to PPI for stroke survivors and carers. The perceived benefits to the research process included: asking questions, keeping researchers grounded and directing the research agenda. All participants drew upon their experiential expertise in their PPI role, but some also drew upon their professional expertise to provide additional credibility. Stroke survivors and carers can be involved in PPI at different levels of involvement simultaneously and the majority of participants wanted to be more involved. Barriers to involvement included: location, transport and stroke survivors capacity to concentrate and comprehend complex information. Facilitators included: reimbursement for travel and time and professionals effort to facilitate involvement.

CONCLUSIONS

PPI in stroke research benefits stroke survivors and carers and is perceived to benefit the research process. The barriers and facilitators should be considered by professionals intending to engage stroke survivors and carers collaboratively in research.

IMPLICATIONS FOR REHABILITATION

This study has implications for PPI in stroke rehabilitation research, which could also be extrapolated to stroke rehabilitation service development and evaluation. Professionals facilitating PPI need to invest in developing supportive relationships in order to maintain ongoing involvement. Professionals need to be aware of how the varied consequences of stroke might impede participation and strategies to facilitate involvement for all who wish to be involved. For each rehabilitation issue being considered professionals need to decide: (1) how representative of the specific rehabilitation population the PPI members need to be, (2) whether experience alone is sufficient or whether additional professional skills are required and (3) whether training is likely to assist involvement or potentially reduce the lay representation.

Authors+Show Affiliations

a ScHARR, University of Sheffield , Sheffield , UK and.a ScHARR, University of Sheffield , Sheffield , UK and. b Sheffield Teaching Hospitals NHS Foundation Trust , Sheffield , UK.

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

25598139

Citation

Harrison, Madeleine, and Rebecca Palmer. "Exploring Patient and Public Involvement in Stroke Research: a Qualitative Study." Disability and Rehabilitation, vol. 37, no. 23, 2015, pp. 2174-83.
Harrison M, Palmer R. Exploring patient and public involvement in stroke research: a qualitative study. Disabil Rehabil. 2015;37(23):2174-83.
Harrison, M., & Palmer, R. (2015). Exploring patient and public involvement in stroke research: a qualitative study. Disability and Rehabilitation, 37(23), 2174-83. https://doi.org/10.3109/09638288.2014.1001525
Harrison M, Palmer R. Exploring Patient and Public Involvement in Stroke Research: a Qualitative Study. Disabil Rehabil. 2015;37(23):2174-83. PubMed PMID: 25598139.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Exploring patient and public involvement in stroke research: a qualitative study. AU - Harrison,Madeleine, AU - Palmer,Rebecca, Y1 - 2015/01/19/ PY - 2015/1/20/entrez PY - 2015/1/20/pubmed PY - 2016/5/24/medline KW - Public involvement KW - stroke KW - thematic analysis SP - 2174 EP - 83 JF - Disability and rehabilitation JO - Disabil Rehabil VL - 37 IS - 23 N2 - PURPOSE: To explore the experiences of patients and carers involved in patient and public involvement (PPI) activities for stroke research. METHODS: Semi-structured interviews conducted with stroke survivors and carers (n = 11) were analysed using thematic analysis. RESULTS: Four key themes emerged: impact of PPI on the individual and the research process, credibility and expertise, level of involvement and barriers and facilitators to PPI for stroke survivors and carers. The perceived benefits to the research process included: asking questions, keeping researchers grounded and directing the research agenda. All participants drew upon their experiential expertise in their PPI role, but some also drew upon their professional expertise to provide additional credibility. Stroke survivors and carers can be involved in PPI at different levels of involvement simultaneously and the majority of participants wanted to be more involved. Barriers to involvement included: location, transport and stroke survivors capacity to concentrate and comprehend complex information. Facilitators included: reimbursement for travel and time and professionals effort to facilitate involvement. CONCLUSIONS: PPI in stroke research benefits stroke survivors and carers and is perceived to benefit the research process. The barriers and facilitators should be considered by professionals intending to engage stroke survivors and carers collaboratively in research. IMPLICATIONS FOR REHABILITATION: This study has implications for PPI in stroke rehabilitation research, which could also be extrapolated to stroke rehabilitation service development and evaluation. Professionals facilitating PPI need to invest in developing supportive relationships in order to maintain ongoing involvement. Professionals need to be aware of how the varied consequences of stroke might impede participation and strategies to facilitate involvement for all who wish to be involved. For each rehabilitation issue being considered professionals need to decide: (1) how representative of the specific rehabilitation population the PPI members need to be, (2) whether experience alone is sufficient or whether additional professional skills are required and (3) whether training is likely to assist involvement or potentially reduce the lay representation. SN - 1464-5165 UR - https://www.unboundmedicine.com/medline/citation/25598139/Exploring_patient_and_public_involvement_in_stroke_research:_a_qualitative_study_ L2 - http://www.tandfonline.com/doi/abs/10.3109/09638288.2014.1001525 DB - PRIME DP - Unbound Medicine ER -