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Cited by 113Mental Health and Patient InvolvementCommunity Health and DevelopmentHealth Policy Implementation Science

Service user involvement in nursing, midwifery and health visiting research: a review of evidence and practice

Smith, Elizabeth, Ross, Fiona, Donovan, Sheila, Manthorpe, Jill, Brearley, Sally, Sitzia, John, Beresford, Peter·2008·International Journal of Nursing Studies
DOI 10.1016/j.ijnurstu.2006.09.010
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Abstract

Objectives In the UK policy recommends that service users (patients, carers and the public) should be involved in all publicly funded health and social care research. However, little is known about which approaches work best in different research contexts and why. The purpose of this paper is to explain some of the theoretical limitations to current understandings of service user involvement and to provide some suggestions for theory and methods development. This paper draws upon findings from a review of the research 'evidence' and current practice on service user involvement in the design and undertaking of nursing, midwifery and health visiting research.Design A multi-method review was commissioned by the NHS Service Delivery and Organisation (SDO) Research and Development Programme. The timeframe was April 2004-March 2005. The full report (Ref: SDO/69/2003) and supplementary bibliography are available from: http://www.sdo.lshtm.ac.uk. REVIEW METHODS/DATA: Initial searches of the health and social care literature and consultations with researchers were used to develop a broad definition of the topic area. A service user reference group (26 members) worked with the project team to refine the scope of the review, to set inclusion criteria and develop a framework for the analysis. Systematic searches of the literature were undertaken online and through library stacks (345 relevant documents were identified). Ongoing and recently completed studies that had involved service users were identified through online databases (34 studies) and through a national consultation exercise (17 studies). Selected studies were followed up using telephone interviews (n=11). Members of the service user reference group worked with the research team to advise on key messages for dissemination to different audiences.Results Information was gained about contextual factors, drivers, concepts, approaches and outcomes of service user involvement in nursing, midwifery and health visiting research, as well as developments in other research fields. Synthesis of this information shows that there are different purposes and domains for user involvement, either as part of researcher-led or user-led research, or as part of a partnership approach. A number of issues were identified as being important for future research. These include: linking different reasons for service user involvement with different outcomes; understanding the relationship between research data and service user involvement, and developing conceptualisations of user involvement that are capable of accommodating complex research relationships. Suggestions for the development of practice include: consideration of diversity, communication, ethical issues, working relationships, finances, education and training.Conclusions Because research is undertaken for different reasons and in different contexts, it is not possible to say that involving service users will, or should, always be undertaken in the same way to achieve the same benefits. At a research project level uniqueness of purpose is a defining characteristic and strength of service user involvement.

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  • Value sets greatly influence PPI processes within a study; and the model of PPI in each study was seen to be influenced by the CI's desired outcomes from the PPI input.

    “Value sets greatly influence PPI processes within a study; and relatedly, in turn, the model of PPI in each study was seen to be influenced by the CI's desired outcomes from the PPI input.18”

    From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [18]

  • In contrast to previous observations that PPI conceptualisations have not addressed the dynamic nature of PPI within research, our analysis, and the framework that it underpins, is able to take into account a dynamic concept of PPI within a research study.

    “In contrast to previous observations 18 that PPI conceptualisations have not addressed the dynamic nature of PPI within research, our analysis, and the framework that it underpins, is able to take into account a dynamic concept of PPI within a research study.”

    From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [18]

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Authors
Smith, E., Ross, F., Donovan, S., Manthorpe, J., Brearley, S., Sitzia, J., & Beresford, P.
Affiliations
  • King's College London (GB)
  • St George's, University of London (GB)
  • National Health Service (GB)
  • Brunel University of London (GB)
Corresponding author
Smith, Elizabeth
ORCID
Venue
International Journal of Nursing Studies
Publisher
Elsevier BV
Published
2008-02
Volume
45
Issue
2
Pages
298-315
ISSN
0020-7489 (ISSN-L)
DOI
10.1016/j.ijnurstu.2006.09.010
OpenAlex
W2012102933
Cited by
113
References
80
Citations by year
2025: 4 · 2024: 1 · 2023: 4 · 2022: 1 · 2021: 4 · 2020: 8 · 2019: 8 · 2018: 7 · 2017: 7 · 2016: 8 · 2015: 7 · 2014: 6 · 2013: 11 · 2012: 11
FWCI
4.48
Type
journal article
Language
en
Open access
closed
Licence
Locations
  • International Journal of Nursing Studies (publishedVersion)
  • PubMed (publishedVersion)
  • Research Repository (Kingston University London) (submittedVersion)
  • Research Portal (King's College London) (submittedVersion)
  • LSHTM Research Online (London School of Hygiene and Tropical Medicine) (submittedVersion)
Topics
  • Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
  • Health Sciences › Health Professions › General Health Professions › Community Health and Development
  • Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
Keywords
user participation, patient and public involvement in research, nursing research, midwifery research, user-led research, partnership research, research ethics, caregivers, health and social care research, diversity in research participation
MeSH terms
Community Health Nursing, United Kingdom, Midwifery, Nursing, Nursing Research, Evidence-Based Medicine

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