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

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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.

Section snippets

What is already known about the topic?

  • 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.

  • Involving service users as active partners in research processes can help to achieve better quality research, which might lead to better quality health services. However, little is known about which approaches work best in nursing, midwifery or health visiting research contexts or under what circumstances successful outcomes can be achieved.

What this paper adds

  • This paper provides an analytical account of service user involvement in the design and undertaking of nursing, midwifery and health visiting research in the UK.

  • The paper suggests ways for researchers and research organisations to develop their capacity to work with service users. Important issues to consider are diversity, communication, ethics, working relationships, finances, education and training.

About the study

The aim of the study was to inform the NHS Service Delivery and Organisation (SDO) Research and Development Programme about the theory and evidence on service user involvement in the design and undertaking of nursing, midwifery and health visiting research. The team that undertook the work came from a range of academic and NHS research backgrounds; including nursing, mental health, social work, social policy and public involvement. Our different perspectives were helpful for making links to

The scope of the review

The project team aimed to work with members of the service user reference group to make decisions about the scope of the review and to set inclusion criteria. Before we could do this we needed to develop a broad definition of what we meant by ‘service user involvement in nursing, midwifery and health visiting research’. We developed a series of working definitions (see appendix of the full report), using initial sweeps of the literature and consulting with researchers working in the area. From

Synthesis and analysis

We have described our approach to using different methods to analyse and synthesise information from a wide range of sources as a multi-method review. Previously, researchers have developed different methods for synthesising information from diverse sources. We specifically looked at the work of Britten et al. (2002) and Greenhalgh et al. (2004). Although these approaches guided our thinking they did not always seem to fit the purpose of what we were trying to achieve. A review of issues in

The nature of the data

Searches of health and social care electronic databases (listed in Appendix A) identified 2132 publications of which 345 were judged to be relevant based on their titles/abstracts. An annotated bibliography of all documents included in the review is available online as a supplement to the full report (http://www.sdo.lshtm.ac.uk). Library searches for books and chapters revealed a further 25 documents, most of which were only partially relevant to the topic area and to the scope of the review. A

What is known about service user involvement in NM&HV research

The study shows how service user involvement in nursing, midwifery and health visiting research can be conceptualised. It also shows how nursing, midwifery and health visiting research has contributed to different theories and approaches to involving service users and suggests ways of involving service users in the broad ranging contexts of nursing, midwifery and health visiting research. In this paper it is only possible to look at some of the key contextual factors, issues and challenges for

Contextual factors

Service user involvement in research has been influenced by a complex interplay of social and political ideas and movements. Other authors have described these factors so we will only provide a brief overview here and direct the reader to key publications.

  • (i)

    Consumerism and participation: From the 1980s ideas about consumerism in UK health services have been driven by attempts to meet increasing demands on health services (Segal, 1998). Consumerism has generally been interpreted as patients having

Conceptualisations and approaches

Service user involvement in research has been conceptualised as a hierarchy and as a continuum. The most frequently cited model in the research literature is Arnstein's (1969) ladder of citizen participation. This was developed to represent different levels of control the poor had over decision-making processes in the US. A hierarchical relationship between concepts of patient involvement, participation and partnership has also been perceived in relation to nursing practice (Cahill, 1996). In

Outcomes of involvement

The research literature shows that involving service users in different aspects of the research process is widely thought to be valuable. Yet, without understanding the particular reasons why service users were involved it is difficult to make any judgements about the nature of the outcomes that were achieved.

We found that few published NM&HV studies had a clear rationale or objectives for involving service users. Often, reasons for involvement were described in very general terms. Previous

Capacity to develop research relationships

A range of social, cultural and economic resources is required to support research relationships effectively. Those who fund, lead or otherwise contribute to nursing, midwifery and health visiting research can plan for and address these in a number of ways.

Conclusions

The review brought together disparate information about user involvement in nursing, midwifery and health visiting research using systematic and reproducible methods. Undertaking the national consultation and interviews with project leads was highly beneficial for identifying and interpreting key issues, ideas, suggestions and ways forward. Although these elements of the review were dependant on the experiences and knowledge of members of NM&HV research communities at the time, the information

Acknowledgements

The project was funded by the NHS Service Delivery and Organisation Nursing and Midwifery Subgroup through a process of open tender.

We would like to acknowledge the contribution of members of the service user reference group and their organisations: Age Concern; Association for Improvements in the Maternity Services (AIMS); BLISS—The premature baby charity; British Council for Disabled People; British Heart Foundation; Cancer Research UK; Carers London/UK; Clifford Beers Foundation; Diabetes

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