A Literature Review
August 2009
Pauline Hamilton
Abstract
Aim: to explore the extent of user involvement in pre- registration programmes within the United Kingdom.
Background: The increase in political and social drivers to increase user and carer involvement in health care provision is gathering momentum and extends to the preparation of health care professionals including nurses.
A literature review was conducted and selected papers reviewed to establish current trends in user involvement in pre- registration nursing programmes.
Key issues relate to the challenges inherent in creating meaningful user involvement such as professional identities, power imbalances, organisational obstacles and the commitment required to establish user involvement. Benefits to students have been found, mainly increased understanding of user perspectives, seeing ‘beyond the problem’. Users appear to benefit from involvement in relation to increased self esteem and confidence.
Examples of good practice exist with some universities achieving sustained involvementbeyond tokenism. To extend this good practice, greater collaboration and sharing of good practice is required.
The evidence base to support ongoing user involvement requires much greater evaluation through well developed research approaches.
Table of Contents
Abstractpage1
1.1 Aimpage3
1.2 Rationalepage3
1.2 Search strategypage3
2.0 Policy contextpage4
3.0 Selection of candidates for nursing programmespage7
3.1 Assessment of student workpage7
3.2 Teachingpage8
3.3 Curriculum developmentpage12
3.4 Interprofessional educationpage14
4.0 Challenges and solutionspage15
4.1 Discussionpage17
5.0 Referencespage20
5.1 Appendix 1page24
1.1Aim
The aim of the literature review is to scope the extent of contemporary user involvement in pre- registration / undergraduate nursing curricula within the United Kingdom.
1.2 Rationale
The rationale for undertaking the literature review is to determine the extent to which current philosophical imperatives and policy directives to include users in pre- registration curricula are being met. As there is user involvement in service development and in monitoring of services it suggests the need to increase user involvement in pre registration nursing curricula and indeed the regulatory body is demanding this (NMC 2008).
1.3Search Strategy
Debate exists about terminologyand language associated with user involvement and there is no one user voice, according to Forrest et al (2000), with Langton et al (2003) and Tait & Lester (2005) concurring. Livingston &Copper (2004) reflect the issue when exploring mental health training and more recently, Fitzhenry (2008) found the same ambiguity associated with user involvement in social work education. It can be proposed that the language used to describe users is variable. Across the boundaries of professional practice in health, social care and nursing, terms may overlap, have synonymous meaning or be exclusive to one client group or branch of nursing. Local trends and historical development of user involvement may also diverge from the terms referred to in recent policy documents. In itself, the lack of clarity around meanings ascribed to these terms, reflects the complexity of user involvement in pre - registration education and the wider education context.
In recognition of this fact, the search strategy encompassed multiple search terms, such as user; carer; service user; client; survivor; involvement; collaboration and research.Terms were truncated to capture words with multiple endings with Boolean logic added to link search terms.Following initial development of key words, electronic databases were searched such as CINAHL, MEDLINE, BNI, PsychINFO. Following initial retrieval of papers, additional key words were used, as well as hand searching individual reference lists. Government websites such as Department of Health, Northern Ireland and Welsh Assembly and Scottish Government websites were also searched to identify the drivers and push pull factors associated with user involvement. Additionally, recent green and white papers were scrutinised.In order to source grey literature, relevant sites were searched including Nursing and Midwifery Council; Royal College of Nursing; NHS Education Scotland;Council of Deans; Quality Assurance Authority. Nursing education journal databases such as Nurse Education Today were also searched. Finally a Google scholar search was used.Date history was initially set at 2000 due to the numerous policy documents arising since then, however, following review of cited literature within the retrieved papers, some literature pre - 2000 has been included. Throughout this paper, the tern user will be used.
Clearly a body of literature exists in regard to user involvement in social work preparation programmes, however this is largely viewed as being outwith the scope of this paper with cognisance that lessons may be learned through collaborative practice with health and social care colleagues.Attention should be drawn to the likelihood of user involvement that has not been disseminated through published material.
2.0Policy context
Within the United Kingdom, policy and regulatory context has developed as part of National Health Service (NHS)modernisation and reform, placing a duty on providers of care to involve patients and public ( NHS Act 2002, 2006, NHS (Scotland) Reform Act, 2004, NHS (Wales) Act 2006). Whilst this duty is no longer new, more recent legislation and directives, strengthen the imperativeand suggest that a more systematic approach is required on a national level (DOH 2005, 2006,2007).
Placing the client at the heart of the NHS, mutuality is embedded as a duty, with the need to have involvement of users at many stages from the evolution and development of services/programmes though to evaluation of services delivered. The principles underpinning user involvement in all four UK countries is similar, with some unique features that reflect strategic direction setting and regional application of principles.
There is evidence of this evolutionary process in action through for example, establishment of Local Involvement Networks (LINks) that replaced patient forums, strengthening public involvement in all levels of care. In Scotland the Scottish Health Council, established in 2003 acts as an expert body to facilitate patient focus and public involvement throughout NHS Scotland (
In order to support the guiding principle of mutuality, directives and guidance have been generated that may provide direction though not always the route of travel. Gaps remain in relation to skills, knowledge, opportunity and willingness to transform the directives and guidance into action according to Bradshaw (2008)andconfirmed by Le Var (2002) who highlighted the lack of strategic and consistent approach to facilitate such involvement beyond tokenism.
As the momentum gathers in formalising patient and public involvement in health services, there is alsoguidance and directives from Quality Assurance Agency for Higher Education (QAA) who suggest programme development groups should include service users (QAA, 2007). Nursing and Midwifery Council (NMC) also suggest that user involvement should extend to student selection and recruitment, curriculum planning, teaching, assessment and evaluation (NMC 2005, DOH 2006a). Each of these aspects of education are complex, bringing unique challenges in order to satisfy national and local need.
One of the tenets of the DOH, Departmental Report (2008), is the value placed on people and partnerships, to achieve better care for all (DOH 2008 p 6). To translate this goal from being aspirational to achievable, it is clear there is the desire and need for all health professionals, to be equipped for collaborative working with users, creating a shared sense of purpose. Notwithstanding, the current review of pre - registration nursing being undertaken by the NMC on behalf of the Department of Health is awaited and may further impact on developments.
User involvement is tentatively being harnessed by the higher education sector responsible for preparation of health care professionals who require the skills of partnership working with the public in their sphere of practice. However, in his debate about user involvement, Bradshaw (2008) challenges institutions to respond to the plethora of government guidance asserting that nurses do not fully understand the best way forward. Additionally, there will continue to be some users who choose to hold the view that the health care professional is the expert and as such responsible for decision making, a stance supported by Livingstone & Cooper (2004) who discuss the traditional passive role patients have played in medical education.
Additionally, there will be seldom heard groups who for the purposes of service delivery are hard to reach and so it is unlikely they will be involved in educational initiatives while caution is required to avoid overburdening those willing or over consulted groups such as children (Coad & Twycross 2006). Clearly there are many challenges that require creative solutions.
3.0Selection of candidates for nursing programmes
An advantage of face to face user involvement in selection and recruitment of students is the explicit value placed on user involvement according to Tew at al (2004). They caution that true involvement means equal weight given to the decisions made by users and professionals alike. Lathlean et al (2006) cite the example of a user reference group participating in an undergraduate recruitment fayre, regarded highly by both students and staff. The group comprises users, carers and allies from the statutory and voluntary sector who notably negotiated terms of reference to include preparation for their university activities. It is interesting that the group helped to shape their involvement from the outset. As an alternative to face to face involvement, Simson (2006), part of the Mental Health Nurse Academics UK offers some insights of how users may be involved, such as offering potential questions to interview panels or contributing to identifying selection criteria.
3.1Assessment of student work
Service user involvement in assessment of practice competency, in particulartherapeutic relationships in mental health nursing was investigated by Speers (2008), to ascertain the views of stakeholders, includingusers, students, mentors and lecturers. Results of semi structured interviews revealed that while findings in the main were favourable, such as the benefit of students getting first hand, honest feedback, some important reservations emerged. Concern was raised by nursesabout vulnerable students losing confidence if feedback was influenced by the users health status, or negative views of the wider service suggesting that support of users and students is required in the form of mentoring or advocacy to contextualise feedback. In principle, stakeholders supported the ethos of user involvement in student assessment, recognising that practicalities may impede progress thus apilot was recommended.
Building on the earlier work of Wood & Wilson - Barnett (1999), Frisby (2001) involved users in classroom based formative assessment with mental health branch students. They discuss the ‘partnership principle’ required of mental health nurses in practice and the need for it to be harnessed within the educational experience. Students presented aspects of a client assessment from clinical practice through role play to users, lecturers and peers. Following debriefing, students reflect on the activity aiming to developmore client centred clinical decision making. Students found more strengths than weaknesses to the method such as greater understanding of user perspectives and accepting constructive criticism. Users involved in the activity reported a sense of empowerment. Selection of users was though user organisations, similar to Wilson - Barnett (1999),with lecturers retaining professional accountability and responsibility to support users following the sessions if issues arise in the session that may be challenging for them. Inherent in this approach is the need for staff commitment as it may be argued to be an additional facet to the lecturer role.
Both authors support early user involvement in educational programmes to minimise discomfort felt by students and to begin to forge the ‘partnership principle’ from an early stage with the notion that user involvement is the norm in education, augmenting the view about user involvement in recruitment activities (Tew et al 2004, Simons 2006).
3.2Teaching
In one of the few comparative studies, Wood & Wilson - Barnett (1999),found user involvement in classroom can lead to increased client centredness.Their research with mental health branch students using triangulation hadtwo aims, to develop user involvement and investigate if user involvement in classroom would enable a more user centred approach to mental health assessment. Questionnaires measured individualised approaches to client need, empathetic understanding and use of terminology and jargon. Classroom observation and student questionnaire results supported the aim of their research that students exposed to users were less likely to use ‘distancing’, use less jargon and have a more user centred approach to care than those not exposed to users.
Todevelop continuous user involvement in mental health branch programmes rather than ad hoc inclusion, McAndrew & Samociuk (2003) undertook anevaluation case study,with fivestudents five users, two lecturers and two researchers who completed Wood & Wilson- Barnett’s (1999) questionnaire. Hoping to gain insight into what recipients of mental health care consider important, with a view to informing the curriculum, an action research approach was used. Attitudes to user involvement were examined and provided themes of discourse to form the basis of future group reflective sessions shared by students and users. Similar to Speers (2008), students expressed concern about being held to account for the wider problems encountered by users in the NHS though do feel their experience could be enriched through collaboration. A newly appointed service user facilitator enabled access to support groups to identify user participants.
Warne & McAndrew (2006)further debate the challenges posed by user involvement arguing that the unconscious processes inhibitingtrue partnerships and perpetuating power imbalances between professionals and users are partly caused by preparation of students taught not to get too involved. Additionally,users entering the world of professionals encounter power imbalances.One solution proposed is the inclusionof Service User Experience Knowledge(SUEK) in pre -registration curriculum.
Publication of Promoting Health Supporting Inclusion (2002), required pre -registration programmes to evidence specific outcomes regarding inclusion, acting as a springboard for NHS Education Scotland (NES) to prepare learning disabled teachers and develop a suite of learning materials.Teachers then contributed to curriculum development and delivery (Hamilton & Thomson,2004, 2005) by advising on scenarios for Problem Based Learning and leading tutorials. Following exposure to a NES video, students prepared questions for teachers about their lives. Discussion based on the questions proved to be an enriching experience for both students and university lecturers. Lecturers commented on their increased knowledge and understanding gained from working withlearning disabled teachers and students responded positively regarding knowledge and understanding.Initially, the issue of remuneration was thorny, influenced by constraints of service users ability to reach a threshold of income and the institutions reticence to pay the users as teachers.
Another collaborative project used a patient’s letter within Problem Based Learning. The patient, who had recovered from a mental health issue wrote a letter to students that formed the basis of the usual problem based learning activity. Although Wright & Brown (2008) acknowledge limitations of the small evaluative study, results convey the relevance to practice (42.2% much more relevant), interest (44.4% much more interesting) and appropriateness (33% more appropriate)found by students. Key to this project is that it’s conception derived from a service user and carers group, whose goal is to embed the users voice into the work of faculty at University of Central Lancashire (Downe et al, 2007) and it appears to facilitate creative, meaningful involvement (
Similarly, Rush & Barker (2006) combined service user involvement with enquiry based learning for first year diploma nursing students. Lecturers prepared users and established ground rules such as confidentiality and personal disclosure and a ‘contract’ of agreement was raised including payment. Users had previously participated in classroom teaching, one had a teaching qualification. Classroom sessions were before and after seven weeks practice placement. Lectures reflected with the users, senta thank you letter, and copies of student evaluations. Students commented on the value of the personal experience and user voice brought to their learning,commenting on the theory practice link.Small group teaching may lend itself to user involvement however, in programmes that have large cohort numbers, an additional challenge is posed in securing partnerships.
A different approach was taken by Costello & Horne (2001) whose case study outlined the use of three inpatients in classroom teaching with23 adult branch students. Selection of patients, medical agreement and ethical issues were overcome prior to the session, added to practicalities such as timing, transporting and preparing patients, this approach clearly requires full commitment of university staff. While students found the sessions valuable in relation to patient perspectives, some expressed disquiet about asking patients sensitive questions and felt inhibited by their presence. Thus another challenge is ensuring the readiness of students to maximise an experience which is out of context to their prior learning perhaps another argument in favour of early involvement.
Although evaluation of perceived benefits of user involvement has occurred, no assessment of the impact on practice is evident as highlighted by Morgan & Jones (2009).Rush (2008) attempted to fill the gap by evaluating 26 students exposed to classroom user involvement. All students gained new knowledge,46% underwent transformative learning that would enhance positive attitudes in practice. Students cited role reversal as an important feature to highlight power issues, though they felt uncomfortable at times when hearing user’s experiences emphasisingthe need for a supportive environment. Although a single study, this is an important step forward.
3.3Curriculum development
As a platform for curriculum development, Forest et al (2000) sampled 34 users recruited from user organisations and mental health drop in centres to discover what they thought about attributes mental health nurses should have. Despite being a small scale study, important issues emerged from the focus groups such as; representativeness; tokenism; conflict. Critically, the conflict between professional knowledge and caring attributes are highlighted by some users as being mutually exclusive. Thus, a continuum is supported, with human and professional qualities at either end, suggesting the need to have human qualities at the outset to enable development of professional qualities.Another continuum supported by the authors is that of involvement, based on the model from Goss & Miller (1995) with five levels of involvement from none atlevel one, to partnership at level five,with users working as lecturers. Benefitsof using such a model are visibility of involvement and the opportunity to measure progress along the continuum, therefore becoming a useful starting point for institutions to initially assess their level of engagement with users and then to determine if progress is made. Additionally it may provide the focus for strategic involvement. Even with a dedicated group of individuals championing user involvement, many issues require skillful and sensitive handling.