The service user's voice in professional healthcare education has moved from a passive to a more active person-centred role, where people with lived experiences engage in teaching as partners to share their views (Spencer et al, 2011). Learning together shapes professional attitudes for compassion and empathy, while seeking greater understanding of how to involve service users in all aspects of their care, including shared decision making (Anderson et al, 2011; Towle et al, 2016). Most curriculum developers, including in midwifery, fail to understand what it means to involve users and carers, with recent systematic and best evidence reviews revealing areas where progress is still needed (Towle et al, 2016; Gordon et al, 2020).
In this article, the term ‘service user/mother’ will be used to represent those who receive health and social care with a focus on mothers. The authors recognise the use of other terms, such as ‘patient’ and ‘client’ in other professions. The term ‘carer’ will be used to refer to unpaid carers who support people with complex needs, and this includes mothers who have long-term care of disabled children.
Involving service users
Medicine has been slow to establish involvement of experts by experience, but has shown that all curricula lack theoretically informed perspectives (Regan de Bere and Nunn, 2016; Spencer, 2016), while nursing and social work have made early advances, especially in the field of mental health nursing and social work (Downe et al, 2007). There is also evidence of progress in midwifery (Warren et al, 2017). The reasons why this progress has been difficult appear to be both practical and systemic, as faculty require appropriate infrastructure, support and resources (Basset et al, 2006). Furthermore, researchers made statements on involvement that showed that they were concerned that ‘involvement is often limited to a specific population of patients rather than reflecting the diversity of lived experiences’ (Towle et al, 2016). In midwifery, it remains paramount that parents can share their experiences of what, for many, is a worrying but exciting and special time for the development of ‘respectful relationships, tailored to their needs’ (Renfrew et al, 2014).
Service users' active involvement in professional healthcare education follows a global policy push over recent decades for their greater involvement in all aspects of health and social care delivery and research (Department of Health and Social Care (DHSC), 2000; Institute of Medicine, 2000; Health Council of Canada, 2006). In the UK, an NHS reform marked a shift towards teamwork (DHSC, 2000); a plethora of policy documents have since followed, reflecting modern aspirations for integrated care and setting out how professionals should involve service users in every step of their health and social care journey (DHSC, 2001; 2005; 2007; 2009; 2021). Working with mothers and their partners remains a pivotal central tenant of midwifery training; midwifery values in the UK are for ‘respect, communication, community knowledge, and understanding. Care tailored to women's circumstances and needs' (Nursing and Midwifery Council (NMC), 2019).
UK political drivers have seen service user involvement as central to increased quality and safety and learning how to improve care delivery in the NHS (Francis, 2013). This is highly relevant in UK midwifery care, where the Ockenden (2022) report highlighted the importance of partnership working and interprofessional learning for training the midwifery team to listen to mothers. This work began decades ago, through the social disability movement advocating for service users to have greater influence over the decisions that affect them (Beresford and Croft, 2016). Consequently, there has been a proliferation of quality improvement research involving the patient voice, and the development of national advisory boards to support this (INVOLVE, 2019). Professional healthcare education has had to advance rapidly to ensure that this partnership agenda informs the foundations of student learning (Towle et al, 2010). Propelled by their respective professional bodies, social work, nursing, medicine and midwifery have led the way in efforts to embed the user voice in programme delivery (General Social Care Council, 2004; General Medical Council, 2009; NMC, 2019).
There are now a range of active roles for service users in healthcare education, ranging from no or minimal involvement to valued educator partnerships, where they make a valued and meaningful contribution to decision making (Towle et al, 2010; Towle and Godolphin, 2011). However, despite existing models, there is still some hesitancy by higher education institutions to agree what partnership working in these institutions looks like (Simons et al, 2007; Happell and Roper, 2009; Rhodes and Nyawata, 2011; Unwin and Rooney, 2020), with a recent review emphasising the need for greater theoretical clarity on what it means to involve service users in partnerships in the academic community (Bennett-Weston et al, 2022).
In midwifery, there have been calls for mothers to be involved in their care by midwifery teams (Ockenden, 2022) but there are few examples of true service user partnership initiatives in interprofessional education (Turner et al, 2000; Steven et al, 2016). One example is ‘the listening workshop’, in which interprofessional student teams involving midwives were asked to listen to the concerns about where excellent care was missing from stories told by mothers and service users and carers (Anderson et al, 2019). Winn and Lindqvist (2019) see these storytellers as ‘experts by experience’ who should be supported to co-produce learning outcomes and instructional design. In a scope of the literature, the authors could only identify a small number of papers where the service user voice helped to shape the development of interprofessional teaching design, despite their firsthand experiences of what teamworking means in their care journey. There is even less literature on parents sharing their experiences.
Interprofessional leaders have called for more partnerships with service users to learn and apply the principles of teamwork for optimal care delivery (Cooper and Spencer-Dawe, 2006). Equally, recent research demonstrates the benefits of service users sharing their lived experiences with interprofessional student groups (Kline et al, 2022). Those involving mothers and service users have experienced expansive learning in the co-creation of educational materials that have advanced student learning (Barnes et al, 2006; Anderson et al, 2011; Carr et al, 2012; Margolis et al, 2017; Vijn et al, 2018). In one example, patients and carers had progressed to taking on a leading teaching role becoming co-tutors and many of these were mothers who looked after children disabled from birth (Anderson et al, 2019). In all examples, mothers, service users and carers were face to face with students in community, clinical or classroom settings, so it was important to investigate what this meant for teaching during the pandemic.
The COVID-19 pandemic posed significant challenges for the academic community, with professional healthcare education being forced to suspend face-to-face teaching and learning and use alternative approaches, such as online learning (Khalili, 2020). Despite this, the need to involve mothers in midwifery learning remains pivotal. This article shares a case study for interprofessional learning that moved from face-to-face sessions offered in a community venue to online teaching that integrated technological enhanced learning aspects during the pandemic. The case study remained online while many service users were shielding and wary of returning to face-to-face contact with students and will be reviewed for returning to in-person delivery in 2023.
Case example: a patient and carer group
The University of Leicester formally launched a partnership agreement with service users in 2016, although the work started in 1998 (Anderson et al, 2003). The patient and carer group at the College of Life Sciences of the University of Leicester has over 100 members of all ages, including mothers, and follows ethical principles while working to advance teaching and learning in all health professional curricula. In some applications, patients and carers take on leading roles, as in the listening project where mothers and older adults shared their stories and experiences with students groups that included midwives (Anderson et al, 2019). Since commencement, there have been numerous challenges in managing expectations, faculty development, cost and benefits to the curriculum, as well as in ensuring representation of the city's diverse population. While the group constantly seeks to involve mothers, many work with the group for shorter time periods, as they often return to work and become less available to travel to the classroom to share their experiences. The group has many mothers who, following traumatic births, have children with long-term disability issues and for many reasons do not return to work, allowing them to play a very active role in the community. This case study focuses on a mother's birth story resulting in her becoming a long-term carer for her son.
The co-creation of content and partnership working underpin the workings of the patient and carer group (University of Leicester, 2023). In 2016, a carer's session for interprofessional learning was developed, aligning nursing and pharmacy programmes with expansion to other professions including midwifery imminent. A call to carers to help design the new teaching resulted in two morning workshops with 12 carers who represented caring across a lifespan, including mothers. The workshops were supported by academic and clinical teachers from varying professions. The carers debated and discussed how they wanted the sessions to resonate with students. One member was a volunteer at the local city carer's centre and researched recent data for the student workbook. The carers involved a parent–carer association in the city, and together they agreed that students should meet carers to listen to their stories and work out for themselves the answers to the following challenges that carers regularly face:
- What is a crisis? Find an example. How do carers manage at these difficult times?
- How do carers access information to help them?
- What welfare support do carers receive, including details of benefits and organisations that offer resources?
- What do carers mean when they say they are learning as they go? Find an example
- What has been the impact on the lives of the carers you speak to? Give examples
- What experiences have carers had with issues of concordance?
- What experiences have carers had with issues of confidentiality?
- Who advocates for carers?
- What organisations and/or professionals have helped carers the most and why?
The first workshop ran in 2017 (Table 1) and involved medical, nursing and pharmacy students, with midwifery students joining after the pandemic because of curriculum alignment issues. Student perspectives on what caring means for different professions were explored in an interprofessional setting in a workshop session in induction week entitled ‘privilege to care’, which involved nurses, midwives and medical students. This event for students in mid-training focused on listening to the needs and concerns of carers. This learning did not draw on the work of different professions in caring but sought a common ground for students to consider how to build profession-specific practice responses.
Table 1. Teaching outline
| Content plan | Face-to-face | Online |
|---|---|---|
| Alignment to learning outcomes. Student teams formed as they spend time together | Introductory session led by academics to set scene as patients arrive | Pre-reading of workbookTime getting to know one another, students encouraged in the online platform |
| Outline student challenge for the session | Powerpoint presentation and workbook alignment | Powerpoint presentation and workbook alignment |
| Conversations with carers | Two 45-minute in-depth conversations in safe spaces in community centre. All conversations to support student challenges | Separate student challenges shared online and carers agreed which challenge their stories were best suited to. Carers take turns talking to students as a larger group and sharing issues in chat facility |
| Reflections | Questions and discussion | Questions and discussion |
| A day in the life of a carer | Power drama story acted out by carers | Short film from Youtube on caring |
| Take home messages and ‘so what’ for students going into practice | Final reflections on learning from students and final messages from carersCards from the Carer Centre on how carers feel are read out | Final reflections on learning from students and messages from carersCarers write how they are feeling on whiteboard and students share what they have learnt |
The face-to face events were initially held in a community charity venue, and at each event at least 6–10 carers were invited to attend as paid expert teachers to share their stories. Students heard two stories, one from a carer who was the mother to a child or young person and the other a carer of an older person. An example is shown in Box 1. A mother's reflections of the changes and challenges experienced when moving from face-to-face to online sessions are outlined in Box 2. Figure 1 highlights student feedback on the sessions, from a slide presented in August 2021.
Box 1.A mother's storyI joined the face-to-face carer's sessions when they were already up and running and my first experience was unforgettable. It was very powerful; the students were visibly moved and so was I. Initially, my role was to tell my story to the students, guided by questions designed by carers and displayed both on screen and in their workbooks. My focus was student centred, I don't want to just talk to them. I encouraged them to participate and ask questions at any point.I have been a carer for my son Michael for 29 years and although he is now in supported living, I feel like it's still a full time role. Michael was born at 32 weeks' gestation, miles from home. I contacted the midwife at my local hospital reporting pain and was asked to attend for examination. The midwife told me that contractions had started but the special care baby unit was full, so I would have to be transferred to another hospital. The plan was to give me a drug to slow the contractions for enough time to administer a lung surfactant, which would improve the baby's chance of survival. After a long wait, not knowing where I would give birth, a bed was found and I was transported by ambulance in what was the most frightening journey of my life. Twenty-four hours after his birth, he had a brain haemorrhage and as a result, a diagnosis of hydrocephalus, epilepsy, cerebral palsy, learning disability and autism.At first, telling my story was cathartic, but the benefits have gone beyond catharsis. The work I do fits around my caring responsibilities, as I choose which carers sessions I am able to attend. The role gives me status. It is very rewarding and has helped me come to terms with my experience, turning negatives into a positive outcome. My motive is to raise awareness, so that carers are identified by healthcare professionals as people who need extra support and the caring role is understood and valued. I am able to pursue my personal interest, as I am trained in teaching english as a foreign language and aspire to improve creative teaching and learning.I am part of a team of carers at the University of Leicester, many of whom are going through similar problems and we support each other and share advice. This advice is invaluable because as a carer, you have to fight for provision in education, social services, health and social care and state benefits. For example, I applied for disability living allowance, which I thought my son would be entitled to because his disabilities met the specified criteria. I spent 15 hours carefully filling out the form and meticulously collecting evidence, only to be informed that he was not entitled to this benefit. It wasn't until I threatened to take the Department for Work and Pensions to tribunal that benefits were awarded in full without any further evidence provided. It seemed to me that the system was designed to discourage claimants. I endured many years of living in dread of the annual reassessment of personal independence payment, until I found out that the private companies conducting the reassessments were not supposed to be putting claimants with long-term stable conditions through this annual trauma.Carers are so busy caring that they don't have the time or the energy to look after themselves, and healthcare professionals need to understand that if a carer is unable to continue then they have a crisis on their hands. I have my own health problems that I essentially neglected when my son was living at home. I thought that part of the social services annual assessment should include a contingency plan for if I was hospitalised or when I died. No possibility of this basic planning existed, in spite of me repeatedly asking for it, so I lived with the fear and anxiety of what would happen to my son when I die. This fear drove me to find out myself what the next step might look like. When I realised in 2015 that I had breast cancer, I had to fight to place my son in supported living.
Box 2.A mother's reflections of the changes and challenges going from face to face to onlineAs an educational designer, it was difficult to know how changing from face-to-face to online learning would impact the essential ingredient of human contact and storytelling. The online session was adapted and a steering group, with academic and carer members, was set up to constantly reflect on how the session was being received. Overall, the session was positively received by students, many of whom are now coming to support the patient and carer group because of the power of the session.As a carer, I was concerned that the impact of face-to-face communication would be lost online, so I volunteered to be on the steering group to directly influence the development and frequent evaluation of online content. I was aware that there can be distractions in the home environment, so it was essential to win and keep their attention. Some students would have experience of being a carer themselves or have a family member who was a carer. We gave them the opportunity to share their experience anonymously by providing a blank screen for them to write on about their caring roles in their families. This technique worked well and was used for other student questions; for example, asking them to guess how much weekly carer's allowance we get for spending over 35 hours a week caring, which is currently £69.70. Many carers, including me, have given up full-time work, and carers of pension age are not entitled to receive a carer's allowance.The October 2021 carers' session was a landmark in its development because for the first time, it was delivered and facilitated entirely by carers and I was proud to be a part of this. The patient and carer group logo strapline is ‘forming a bridge between theory and practice’ and I consider this to be my role. When we share our experience, we connect with students on an emotional level and this is why they remember our contribution and (as many students have reported) allow it to influence their professional development.
Reflections for midwives
As midwives, the long-term considerations of what happens to mothers whose children require specialist help and go onto experience a disability can be lost and forgotten, because they work in the clearly defined postnatal period. In ‘the listening workshops’, many student midwives who attended reflected on mothers' stories that were similar to the one shown in Box 1, and think more deeply about safe childbirth (Anderson et al, 2011). There are more calls for involvement of this type for midwives and there has been a powerful interprofessional learning event focusing on end-of-life care for babies (Price et al, 2019).
Discussion
The case study shown in Box 1 shows a mother's story, designed for interprofessional learning where a mother shared her experiences as a carer. There were obvious benefits for the students as an interprofessional group in recognising how different professional contributions fit together when in practice for optimal care. Learning was moved online during the pandemic and there were mixed feelings about the benefits and challenges of working online. It is important to consider how new mothers might be enabled to share their recent birth stories using online methods, which do not entail challenges for travel with their babies. However, in the case presented in this article, the mother, now carer, stated she preferred face-to-face student interactions.
Recent reviews have demonstrated growth in the literature on service user involvement in professional healthcare education; however, they have emphasised the need for greater clarity on what form these partnerships should take (Gordon et al, 2020). The challenges for working with users were been compounded by the pandemic and the necessary shift towards remote learning and working. Many carers in the learning event continued to shield and found it hard to return to in-person events. This case study demonstrated that it is possible not only for mothers to shape interprofessional learning, but to progress to roles where the responsibility for the development and delivery of teaching is largely theirs, irrespective of the challenges posed by the pandemic. This mirrors aspirations outlined by existing models of involvement for service users to make meaningful contributions to educational decision-making processes (Towle et al, 2010); however, driven by recent research in this space (Bennett-Weston et al, 2022), the group continues to strive towards a greater understanding of what partnership working truly means.
It is clear from the case study that moving involvement in interprofessional learning online is not only possible but may be welcomed. However, successfully adapting face-to-face to online teaching appears to be dependent on various factors, including long-term, embedded working relationships between service users (for midwives, these are parents) and educators, grounded in mutual trust and respect. This is highly achievable with consistent midwifery care during the antenatal period, as midwives can ask if mothers would be prepared to help shape learning based on their experiences.
The value of cultivating spaces for reflection between service users and educators to support the development and evaluation of online content should not be underestimated; the steering group described in the case study enabled a feedback loop where carers' experiences of delivering the session online were used to improve subsequent iterations of the session, to ensure its impact on, and positive reception by, students. Online learning provides an easy way for pre-registration midwives in training to connect with mothers by listening to their stories, particularly those who may find it hard to travel to universities for many reasons, especially during the neonatal period. Earlier reflections indicate that using asynchronous online approaches to involve mothers in midwifery education, such as communicating via online forums, may support the recruitment of a more diverse group than face-to-face approaches (Warren et al, 2017). The case study demonstrates the feasibility and success of involving mothers in synchronous online learning. Learning with mothers/cares away from clinical areas means they feel safe to share their true feelings and have reflected on their experiences. While it is true that students meet these people in everyday practice, often mothers and/or carers are not in a position to easily reflect and share. Hence, patient involvement in designated teaching sessions on involvement is important.
Student feedback (Figure 1) indicated that despite challenges, the online carer session had a profound impact on learners, enhancing their understanding of the carer perspective, providing insight into the bureaucratic benefits system and highlighting how they, as future healthcare professionals, could make a positive difference to a carer's experience of health and social care. This ties into the values for midwifery in the UK, which emphasise the importance of tailoring care to women's circumstances and needs (NMC, 2019). The mother in the case study remains moved by her experiences of sharing and continues to strive for advancing a deeper understanding of the experience that cannot come from a textbook.
However, there was some lament on the loss of the emotional power of students meeting and having discussions with mothers face to face, as students often do not show their faces on camera when learning online and there is no visible body language as when face to face in real time (Turner et al, 2000; Cooper and Spencer-Dawe, 2006; Anderson et al, 2019). This was certainly true of listening workshops that involved mothers and midwifery students (Anderson et al 2011). While moving interprofessional learning involving service users online is indeed both feasible and beneficial for learning, the impact of face-to-face sharing of lived experiences has its own benefits that cannot be realised in this medium.
Strategies for developing partnerships between academics/clinical teachers with mothers/carers for interprofessional learning should involve relevant stakeholders and students where possible. These strategies include:
- Reflecting on co-design theories and models that are most appropriate as a guide in the instructional design process relevant to the setting and culture
- Identifying targeted interprofessional competencies developed with emphasis on service user involvement and authentic partnership
- Selecting teaching-learning strategies underpinned by co-design pedagogies that can occur in the classroom, community, hospital and virtual space, as well as in simulated arrangements
- Choosing learning assessment strategies that measure and give feedback on learners' knowledge, skills and attitudes to further competencies in authentic partnership with service users
- Curating teaching and learning resources and opportunities where learners and teachers can read about service user involvement and allow them to witness the lived experiences of patients and carers through authentic interactions.
Conclusions
During the pandemic, midwifery educators were expected to use technical enhanced learning possibilities to meet professional training requirements for authentic service user involvement. This requires preparing safe spaces for students to listen to mothers' stories and develop a deeper appreciation of their experiences in preparation for delivering compassionate care. It offers a realistic route for many new mothers who could more easily share their experiences of pregnancy, birth and postnatal care in the online environment. Support in a remote sense for these carers was challenged by the loss of being physically alongside carers, but the long-standing value of working in a supportive patient and carer community established over many years gave carers the confidence to continue. A newly developed steering group also helped to ensure connectivity between service users/carers and healthcare schools. Persistently positive student evaluation has led to more student–patient alliances since the pandemic.
Upcoming article
The eighth article in the series will discuss lessons learned and future planning. This final article will consolidate the key points from the series and consider what lessons can be learned from experiences of emergency remote teaching during the COVID-19 pandemic. Consideration will be given to the practicalities of emergency remote teaching, including the preparation as well as delivery and proposed outcomes. The paper is written as a guide for others to draw on for future use.
Key points
- Mothers can participate in helping midwives understand about their experiences of healthcare using both online and face-to-face learning methods.
- Service users and carers recognise the emotional impact of sharing their stories, which in the main, is best understood when face to face.
- Involving mothers in midwifery education will depend on the formation of partnerships between mothers and faculty members, so that they feel valued and supported.
- Building excellent communities of people willing to help shape students' learning takes time.
- Involving mothers in interprofessional learning helps different professions and mothers understand how everyone's contributions in clinical care are important.