"An Active, Productive Life": Narratives of, and Through, Participation in Public and Patient Involvement in Health Research

被引:11
作者
Reynolds, Joanna [1 ]
Beresford, Ruth [2 ]
机构
[1] Sheffield Hallam Univ, Sociol, Sheffield, S Yorkshire, England
[2] Sheffield Hallam Univ, Dept Psychol Sociol & Polit, Sheffield S10 2BP, S Yorkshire, England
关键词
participation; narrative interviews; PPI; involvement; health research; public; qualitative; United Kingdom; SOCIAL CARE RESEARCH; IMPACT; ILLNESS; KNOWLEDGE; IDENTITY;
D O I
10.1177/1049732320961053
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
Public and patient involvement (PPI)-engaging the public in designing and delivering research-is increasingly expected in health research, reflecting recognition of the value of "lay" knowledge of illness and/or caring for informing research. Despite increased understanding of PPI experiences within the research process, little attention has been paid to the meaning of PPI in other areas of contributors' lives, and its value as a broader social practice. We conducted repeated narrative interviews with five experienced PPI contributors from the United Kingdom to explore how meaning is constructed through narratives of PPI in relation to their broader "life-worlds." Narratives were extremely varied, constructing identities and meanings around PPI in relation to family and social life, career and employment, financial status, and wider social agendas, as well as health. This emphasizes the importance of recognizing PPI as a social practice with diverse meaning and value beyond health research.
引用
收藏
页码:2265 / 2277
页数:13
相关论文
共 38 条
[1]  
Beresford P., 2003, Nursing Times Research, V8, P36, DOI [10.1177/136140960300800106, DOI 10.1177/136140960300800106]
[2]   Exploring Difference or Just Watching the Experts at Work? Interrogating Patient and Public Involvement (PPI) in a Cancer Research Setting Using the Work of Jurgen Habermas [J].
Bissell, Paul ;
Thompson, Jill ;
Gibson, Barry .
SOCIOLOGY-THE JOURNAL OF THE BRITISH SOCIOLOGICAL ASSOCIATION, 2018, 52 (06) :1200-1216
[3]   Mapping the impact of patient and public involvement on health and social care research: a systematic review [J].
Brett, Jo ;
Staniszewska, Sophie ;
Mockford, Carole ;
Herron-Marx, Sandra ;
Hughes, John ;
Tysall, Colin ;
Suleman, Rashida .
HEALTH EXPECTATIONS, 2014, 17 (05) :637-650
[4]   Theorizing the authentic - Identity, engagement, and public space [J].
Campbell, KB .
ADMINISTRATION & SOCIETY, 2005, 36 (06) :688-705
[5]   Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study [J].
Crocker, Joanna C. ;
Boylan, Anne-Marie ;
Bostock, Jennifer ;
Locock, Louise .
HEALTH EXPECTATIONS, 2017, 20 (03) :519-528
[6]   Black and minority ethnic group involvement in health and social care research: A systematic review [J].
Dawson, Shoba ;
Campbell, Stephen M. ;
Giles, Sally J. ;
Morris, Rebecca L. ;
Cheraghi-Sohi, Sudeh .
HEALTH EXPECTATIONS, 2018, 21 (01) :3-22
[7]  
Earthy S., 2008, RES SOCIAL LIFE, P402
[8]   Patient and public involvement mobile workshops – convenient involvement for the un-usual suspects [J].
Eccles A. ;
Bryce C. ;
Turk A. ;
Atherton H. .
Research Involvement and Engagement, 4 (1)
[9]   Investigating 'care leaver' identity: A narrative analysis of personal experience stories [J].
Evans, Craig .
TEXT & TALK, 2019, 39 (01) :25-45
[10]   Narrative analysis - Or why (and how) sociologists should be interested in narrative [J].
Franzosi, R .
ANNUAL REVIEW OF SOCIOLOGY, 1998, 24 :517-554