The Public Involvement in Education and Research (PIER) partnership was established in 2004 within a qualifying social work programme at Bournemouth University. In 2011, it was then extended across the Faculty of Health and Social Sciences. The partnership employs two service user and carer coordinators and has more than 90 members who are experts by experience and who contribute across the faculty to the design and delivery of lectures, assessment panels, role plays and simulation, admissions, curriculum design and research. Over a typical year, we coordinate more than 900 contact hours between students and service users in addition to the direct contact that students have in placement settings.
Involving women in midwifery education, however, has been a challenge. Time can be particularly precious to expectant and new mothers. Childcare responsibilities often preclude parents from attending university settings to contribute to the design and delivery of a programme or to participate in interview panels and, by their very nature, expectant and new mothers are a transient group in terms of their recent experience of using maternity services. There is little existing literature from the midwifery field that shares and evaluates the impact of different models of involvement on students' learning and subsequent practice, or the impact of ways of overcoming these challenges.
The aim of this article is to provide a critical reflection on the experiences of the PIER partnership, which aimed to address these challenges through the development of three key approaches to meaningfully involve women and their families in pre-registration midwifery education. These approaches were:
Rationale
Over the past decade, there has been increasing recognition of the importance of involving health care service users and carers in professional education and research (Health Foundation, 2011). It has also been recognised that involvement, and embedding first hand experiences and perspectives, can be used effectively to enable students to consider the impact of their practice on women and their families. The Nursing and Midwifery Council (NMC) provides standards for pre registration midwifery education, and one of its recommendations is that the Lead Midwife for Education (LME), employed by an approved educational institution, involves service users and user groups within midwifery programmes of education (NMC, 2009), a requirement which is strengthened in the draft standards currently out for consultation (NMC 2017). There is no specific guidance, however, on how this should be achieved, or for what purpose. A lack of clear guidance can place the onus on universities to be creative in developing involvement that is meaningful, but can also lead to minimal and tokenistic practice if the purpose and impact is not clear.
Categorising involvement
In an attempt to differentiate between levels of involvement in mental health education, Tew et al (2004) developed the ‘ladder of involvement’, which is as follows:
The ladder of involvement provides a useful tool from which to evaluate the nature of involvement. As a partnership, we operate predominantly at Level 5, but acknowledge that the extent of our collaborations differ across the health and social work programmes with which we collaborate. Our involvement in midwifery programmes is currently identified as Level 3, ‘growing involvement’, where the partnership is routinely involved in planning and delivery of sessions within units and the admissions process. This will be considered as we reflect on different models of collaboration and involvement in this paper.
The need for involvement and for this to be meaningfully delivered through collaborations and partnerships is widely evidenced (Downe et al, 2007; Morgan and Jones, 2009; Turnbull and Weeley, 2013; Driesens et al, 2016). Through our partnership's own evaluations of involvement across a range of health and social care disciplines, students have identified significant impact of having service users contributing to and shaping their education. A thematic analysis of more than 2000 evaluation forms collected in a 2-year period from nursing, midwifery, allied health professions and social work students, showed three key benefits:
Further evaluation is needed to identify the extent of the impact beyond the sessions and whether students make changes to their practice as a result. In a study that the partnership conducted into the impact on social work students' subsequent practice (Hughes, 2016), findings showed that the results were individual to each student. Types of involvement perceived as having the most significant impact, particularly when students encountered something similar once qualified, where activities involved conversations with service users and the opportunity to receive feedback on their practice.
Service users and midwifery education
Organisations such as the Association of Improvement of Maternity Services (AIMS), which have been reporting on women's experiences of maternity care for many years, report that women value holistic midwifery care and, above all, a midwife who listens to their views and is non-judgemental (AIMS, 2012). Midwifery students in the UK spend up to 50% of their time in practice working with women during pregnancy and childbirth; therefore it is incumbent upon universities that an appropriate strategy should be in place to both select applicants to pre-registration programmes who demonstrate these qualities, and to engage in activities to foster these qualities in students throughout their programme. Collaborating with service users can ensure that this goal is achieved by creating a culture that recognises the expertise of people with first hand experiences.
Despite the emphasis on personal and professional qualities, and the need for service users to be involved in midwifery education in the UK, there have been few studies on the subject other than in relation to involvement in selection interviews (Long, 2010; Jay, 2012). Studies such as Jha et al (2009), however, have reported high student satisfaction associated with patient involvement in their systematic review of involvement in medical education. Learners have been shown to feel that the sessions are more relevant to them, and that their understanding of patient perspectives is enhanced as a result. Students were also shown to believe that patient contact improved their communication skills and increased their confidence in talking to patients. This replicates the findings of many studies in other health and social care disciplines (Hughes, 2013; Tew et al, 2012; Webber and Robinson, 2012; O'Donnell and Gormley, 2013). This suggests the need for universities to prioritise the development of partnership working across the curriculum, as well as in informing the process for selection of applicants to pre-registration programmes.
In addition to the impact on students and their subsequent practice, there is evidence that this is reciprocal in nature. Patients have reported feeling that their experience of illness and the health care system should be included in medical and health education (Stacy and Spencer, 1999; Walters et al, 2003; Muir and Laxton, 2012); and those that have contributed, have reported a range of benefits. Walters et al (2003) reported specific therapeutic benefits for contributors, such as raised self-esteem and empowerment, development of a coherent ‘illness narrative’, new insights into their problems, and deeper understanding of the doctor-patient relationship. Programmes often receive positive feedback from users, with most wanting to be repeatedly involved. While the rationale for involving experts by experience is clear; collaborating in a meaningful way can be more of a challenge. Ways in which we have sought to achieve this are presented here.
Consulting with women and their families—going to them
Contacting service users
As mentioned previously, a particular challenge of developing involvement in midwifery education has been the transient nature of the service user group and the limited time that expectant and new parents have. A particularly successful approach, therefore, has been to engage with parents through social media and community groups and by adopting a ‘we go to them’ model of involvement. In addition to a number of research studies within the faculty that have used this approach for consulting with women on research topics and design (Grigsby, 2015), social media was used to consult with women on the development of the midwifery curriculum, and in the design of the recruitment and selection process for entry onto pre-registration midwifery programmes. A 2014 review and evaluation of the university's midwifery education provision sought views and perspectives from women at stakeholder meetings, parent groups (two mother and baby groups); and through social media sites such as The Mumsnet discussion board and the Netmums' ‘Coffeehouse’ chat, where parents were asked:
Responses were received from 78 women who identified themselves as in contact with a midwife as a parent or pregnant woman.
Despite the differences in the two questions asked, all the responses focused on personal qualities, with few mentioning specific skills or knowledge. While this could suggest that knowledge and skills were lower in priority for the respondents, it more likely suggested that this was accepted as fundamental to the midwifery role and that respondents wanted to stress the importance of personal and professional qualities. In future, creating the opportunity to engage more actively in the discussions, and asking follow up and clarifying questions, might enable us to develop deeper insights. Not doing this however, enables the respondent to take the lead in what they focus on and prioritise. Emerging themes included midwives being kind, calm and caring; having good communication, and treating women as individuals. Respondents talked about the need for the midwife to appreciate how nervous and frightened a woman might feel, particularly if she was expecting her first child or her previous birthing experience was complicated or traumatic. Comments included:
‘I think midwives need to be understanding and caring and take time to reassure mums at an exciting, but sometimes rather nervous time!’
‘Taking time to listen to each and every pregnant woman's concerns—no fobbing off with “It's just part of pregnancy,” because to that woman; it isn't “just” anything.’
Themes were very much aligned with the 6 Cs of nursing: Care, Compassion, Courage, Communication, Commitment and Competence (Department of Health, 2012) and the humanisation of health care agenda (Todres et al, 2009:68) which emphasise the need ‘to place human beings at the centre of care’. Obtaining feedback from women using maternity services enabled us to incorporate these themes in both the curriculum and the practice assessment document(s) and to provide a more lived experience version of the impact of the 6 Cs by sharing the comments with students.
Influence of responses on recruitment processes
A further purpose of involving women through social media was to inform the process of selecting applicants onto midwifery programmes. Long (2010) and Jay (2012) have reported on the advantages of directly involving women in the interviewing of candidates, but this can be a challenge, given the large number of applicants being interviewed and the impact on a person's time. To address this, we sought to generate a ‘user led’ question to form part of the interview process, drawing on the information provided by women through online forums and community groups. While this approach means that women do not form part of the decision-making process on the day, they play a significant part in influencing this process. This is reflective perhaps of Level 2 of Tew et al's (2004) ladder of involvement criteria, where service users are consulted, but key decisions are made elsewhere. A disadvantage of engaging people through social media is that they are not paid for their time, a key principle of the PIER partnership's work and one of Tew et al's measures for each level. We found, however, that the advantage of social media and online forums was the involvement of a larger and more diverse group of participants than we could have achieved through direct involvement. We also received a greater depth and range of thoughts and personal experiences expressed by the women—perhaps because the anonymity affords them the freedom to be open and honest, and there is an immediacy with which they could share their comments and discuss these with others on the website.
As a result, midwifery candidates are now asked at interview, ‘Which attributes does a student midwife need, to support a new mum-to-be?’ The collated information from the women provides a marking guide for this question. Evaluation from midwifery colleagues identifies that this places particular emphasis on the need for professional values and enables them to explore this with candidates at interview. Further research is needed to compare this with the impact of having service users as part of the interview panel and whether this changes the offer and acceptance decisions made.
Direct involvement of service users in teaching and learning
In teaching and learning we have been able to develop direct models of involvement by collaborating with parents to deliver, contribute to or engage in lectures and seminars. The PIER partnership sees involvement as an active partnership between service users and carers, academics, and students. Teaching sessions are planned in collaboration with the woman or family member to ensure that the students receive a meaningful and relevant learning experience, linked to the unit's intended learning outcomes, and collaborators identify how best to achieve this.
Narratives of stillbirth
One such example sits within a year two midwifery unit of learning, focusing on the theme of ‘grief and loss’.
David (pseudonym used) comes in to talk to students about his experience as a father of a stillborn child, alongside theoretical input from the academic. Students are asked to evaluate the session in terms of their learning and potential impact on their future practice. Comments from the session included:
‘Hearing from a personal source; not studies, stats etc. makes the whole experience more human; less clinical.’
‘I feel I learned a lot from today's session and feel much more equipped to deal with stillbirth. There were common themes about communication, making memories and the midwife's role.’
In organising direct involvement, it is also important to ensure that the contributor gains something positive from being involved as previously discussed. David shared his motivation for doing the session and what he gained:
‘Fathers go through this too! Midwifery education obviously has to be about the care of, and relationship with, mother and baby. I want to tell my side of the story and show them how much I was affected, as the father in a bereavement situation. I hope it gives the students an opportunity to learn by real-world experience and example, much as they learn about the more routine aspects of care. When the students are part of this type of situation, it will be difficult, painful, emotionally draining—I can't prepare the student for what it's going to feel like but I can give them a start so it's not such a shock when it happens for real, the first time.’
David is eloquent and talks confidently about his experience. Students have commented that his words give more meaning to the experience of stillbirth than any theoretical session could possibly impart. It is vitally important to ensure that students can take a break if they wish and that support is provided for them if needed. It is also just as important that David feels supported and listened to. One of the key government drives is to humanise care. We have found that collaborating with parents to design and deliver teaching sessions can provide the essence of what it is like to receive care and enables students the time to reflect on their own experiences of practising. David's session is successful in part due to his use of narrative to describe his and his wife's experience using pictures and telling his story chronologically. Equally poignant are his assertions of what kind of care helped and what actions from health care staff did not. Students report that David's contribution and involvement in their unit provides them with an invaluable legacy of caring sensitively for future parents experiencing grief and loss and aids their development of emotional resilience.
In the same unit, women from the Stillbirth and Neonatal Death Charity (SANDS) are invited to talk to second-year students. They bring mementos of their babies and speak poignantly about their losses. Through this process, students can witness the depth of the women's grief and learn not only how this impacts at the time of birth, but also the period afterwards. One of the women described how her loss was so profound she wanted to dig up her baby just to hold her. Comments such as these have a profound effect on the students. Involving users can be powerful and dramatic, and we have found that strategies need to be in place for both the students and the women to draw on if necessary. This can be acknowledged as part of their learning, and the session can be used to support students to identify and use strategies for developing resilience while on placement and throughout their career. The women, like David, reported that they found collaborating with the university and delivering the sessions to be cathartic and that they saw it as time dedicated to their baby, so the session was mutually advantageous.
Benefits to students and service users
Members of the partnership have consistently identified a desire to share with students their views and experiences of different services and types of support so this can inform their practice. In another second year midwifery unit, entitled Caseloading Practice, a new mother contributes to a session that seeks to raise student awareness of the existence, and importance, of user groups and how they inform maternity service delivery. Eva (real name used with consent), who brings her baby with her, shares her experience of maternity services and provides feedback to students on the impact of individualised care and enabling women to make informed choices. Students evaluate the session highly with comments on what they learned from the session including:
‘Further highlights the importance of allowing women to discuss their previous birth stories so that previous negatives are not repeated and appropriate support given.’
‘A true insight into what matters to women during labour and to highlight the importance of being a woman's advocate. Plus, take awareness of the birth partner and their views.’
‘How consent is still NOT being obtained — importance of informed choice’
Our evaluations show that this type of involvement has an impact on students' knowledge and understanding, emotional resilience, and development of practical strategies to incorporate into their subsequent practice. Students value the opportunity to engage in conversations and to ask questions that they may not have the opportunity to ask when in a practice setting. The aim of the sessions is to value the expertise and knowledge someone with experience has, which goes beyond that of ‘telling their story’. Further evaluation is needed (and planned) to follow up students at a later stage to identify if their practice changed as a result.
Embedding first hand perspectives into teaching by developing digital resources
Direct involvement and the opportunities to engage in conversations can have many benefits for students' learning and subsequent practice, but is not always practicable or in the interests of the service user. The success of the PIER partnership's work has been to explore a range of innovative ways of involving service users, embedding their perspectives and providing choice to people as to how they may wish to contribute or be involved. One approach has been to work in partnership with people who are experts by experience to share their knowledge through digital stories, podcasts, audio recordings and short films (Bournemouth University, 2017). One example in midwifery drew on the work of a midwife and researcher who had conducted a research study using photo elicitation alongside narrative inquiry to explore mothers' experiences of having a child removed at birth (Marsh et al, 2014; 2015; 2016). We worked in collaboration with the researcher and two students from the Faculty of Media and Communication (a producer and editor) to combine the stories and the images the mothers shared and create a digital story (a series of images with an audio narrative). The narrative was voiced by one of the mothers from the research study. As the midwife researcher explains:
‘My research area focused upon the psychological and emotional needs of women, whose previous history warranted the removal of their infant at birth, and those of the midwives who provided care for them. The overarching aim of the study was to explore what women perceived their experience to be and “what was missing” to help support them. It also explored midwives perceptions and experiences of engaging with child protection work and the emotional and physical consequences to them of doing so.’
While an emotionally difficult subject matter to explore, the digital story enables midwifery students and practitioners to do so in a safe and supported environment. The aim is not to shock, but to foster critical reflection by using the digital story as a real world case study from which to analyse, explore and reflect on practice. The collaborative nature of the film and how it was produced is an example of a Level 4 and 5 collaboration and partnership (Tew et al, 2004) and has a legacy in how it can continue to be used. The mothers' narratives provide thoughtful reflections on what worked, what did not and what practitioners might do differently to improve this experience for others. The digital resource offers flexibility in how and when it can be used, and seeks to minimise any negative impact on the service user of sharing a lived experience. In addition to informing midwifery education, the film is also being used for social work students, and in midwifery practice, to improve outcomes and experiences for women who are subject to child protection proceedings.
Reflections from a carer and service user partnership
Throughout this paper we have sought to share our own experiences and practises and in particular what we have found to work and have most impact on student learning and their subsequent practice. It is fair to say that the involvement of service users and carers in education does not ‘just happen’; and that there are a number of distinct stages to developing meaningful involvement in education from recruitment of potential contributors, preparation and training, support during the session and the opportunity to debrief and gain feedback after.
There are cost implications of having this degree of involvement and providing the support necessary to do it well. The development of digital resources such as short films, and consulting with people online, provides effective ways of achieving this with limited resources, as long as the same principles of support, planning and collaboration are incorporated when creating them. The benefit of course, is that they can then be shared across networks, achieving a much wider reach.
While there is an increasing requirement and expectation to involve service users in the design and delivery of pre-registration programmes, there is very little published work in relation to if and how this is being achieved within midwifery education. It is difficult to gauge if this reflects a lack of activity in this field or a discipline that has been slower to share and evaluate existing activity. Without the opportunity to share these experiences and present different models for peer review, there is a risk that involvement becomes stagnant and at a tokenistic level, which is to say Levels 1 and 2 of Tew et al's ladder of involvement.
The authors would encourage educators and practitioners to join in sharing examples of other successful partnerships, so that broader studies can be conducted into the range of models and approaches, their theoretical underpinning, the effect on students' learning and subsequent practice, and what difference this makes to the experiences and outcomes for women and their families in the longer term.