Lived experience narratives in health professional education: educators’ perspectives of a co-designed, online mental health education resource | BMC Medical Education

This research study was reviewed and approved by the Charles Sturt University Human Research Ethics Committee (reference number: H21435). All participants provided informed consent for their survey and/or interview responses to be recorded, collected, analysed, and disseminated.

Study design

A cross sectional study design was used to survey registered users of the online Listening to Voices education resource. Following the online launch of the resource, advertised widely via various platforms to health, human service and education sectors in Australia, people were invited to register to access and use the resource. At the time of registering to access the education resource, people consented to be contacted for research purposes. At completion of the online survey, participants were asked if they wished to participate in an in-depth interview to provide further feedback about the resource.

It has been recognised that lived experience researchers make a unique contribution to the process and outcomes of research and provide an important link to the broader community [30]. To respect this unique contribution and to enhance the outcomes of this research, the research team included two lived experience researchers who were involved in all stages of the research project. Lived experience researchers were involved in survey question design and wording, interpretation of survey responses and were provided with mentoring to support them to conduct the online, in-depth interviews and to participate in qualitative data analysis.

Participants and recruitment

People who had registered to use the resource and self-identified their role as “educator” were invited to participate via an email containing the survey link. The email invitation to complete the survey was sent by a member of the research team who was not involved in the development or promotion of the resource thereby minimising the risk of coercion.

Survey participants were asked to provide their email address if they agreed to participate in a follow-on interview. Participants who agreed to participate in a follow-on interview were contacted by a member of the research team to arrange a mutually convenient interview time.

Data collection

An online survey tool was developed by the research team to address the research questions. Lived experience co-researchers were instrumental in survey development and the choice of terminology used. The survey included 16 questions including demographic questions, closed questions, and open-response questions (see Additional file 1 for the full survey). The online survey was hosted on the Survey Monkey © platform and remained open for three months; participants were provided with one email reminder to complete the survey. The survey was administered by the Spatial Analysis Network (SPAN) at Charles Sturt University. Identifying data were removed by SPAN staff prior to data being made available to the research team for analysis.

Interviews were facilitated by one or both lived experience co-researchers with support from an experienced researcher. An interview guide was developed based on the research questions and informed by the initial analysis of survey data. The aim of the interviews was to explore the survey responses in more depth. All interviews were conducted online using the Zoom platform. Interview length ranged from 22 to 58 min with the average length of interview approximately 42 min. Any potentially identifying information was removed by the research team during the process of transcription and analysis.

Data analysis

Analysis of survey responses was undertaken to identify patterns of current resource use, implementation in different learning contexts and to identify possible changes to the resource to improve utility. The analysis was descriptive in nature identifying response rates and frequencies as appropriate for each variable allowing trends in the data to be identified. The open reflective questions were analysed qualitatively to identify themes.

The research team used a collaborative, inductive approach to thematic analysis to code and generate themes from the interview data. This process of thematic analysis used the six stages as outlined by Braun and Clarke [31]. The process included: (1) Becoming familiar with the data; (2) Generation of initial codes; (3) Identifying themes; (4) Reviewing the potential themes; (5) Defining the identified themes; and (6) Writing up the findings. Interview data were initially coded independently by all members of the team and then grouped according to themes through a collaborative process involving all members of the research team. The iterative process used to review and code the data aimed to ensure auditability and credibility, and to enhance the trustworthiness of the thematic analysis phase. The final themes from interview data were compared with themes derived from the open-response survey questions and where appropriate, themes were combined.

Findings

The online survey was sent to 112 registered users who identified as an educator or professional development coordinator. Fifteen invitations to complete the survey received an out of office on extended leave, notice of resignation from position or error reply; 97 surveys successfully reached a registered user. A total of 17/97 completed surveys were returned (approximately 17.5% response rate). Five survey participants agreed to be contacted for an interview.

The findings are presented in two parts. Part one is further divided into two sections; these two sections summarise the findings from the closed ended survey questions relating to the contexts in which the resource was being used, the relevance of the resource to these contexts and the practicality of using the resource for education.

Part two of the findings presents the analysis of the open-ended survey responses and interview data. Four overarching themes were identified from the analysis of this qualitative data, these themes were: (1) scope for application; (2) future resource enhancement; (3) creating safe learning environments; and (4) impact of the resource. The first two themes aligned with and supported the findings from the quantitative data. Two additional themes – creating safe learning environments and the impact of the resource – were identified from the qualitative data. See Table 2 for an overview of the findings.

Findings part one – quantitative survey data

Learning context and application

Survey respondents were employed in a range of health and education settings. Approximately half (n = 8; 47%) were employed in tertiary education settings; one-quarter in the health service sector (n = 4; 24%); with fewer respondents employed in the disability/social service sectors (n = 2; 12%); and a group who identified “other” work contexts (n = 3; 17%).

Most survey respondents (n = 14; 88%) had viewed the resource at the time of completing the survey and half of these had commenced using it in education activities (n = 7); the remainder indicated they were planning to use it. In the tertiary education setting it was being used with undergraduate and masters level students (including public health, health science, nursing, and occupational therapy students). Content had been embedded in courses from first through to third year level, as well as in post-graduate levels of education. In the health and disability/social service sectors the resource had been used with nursing, allied health, medical staff, and medical students on placement. The resource had been used with cohorts as small as two learners to as large as 300. Most educators using the resource were also using the Facilitators’ Guide to support the development and delivery of education activities (n = 6/7; 83%).

Relevance and practicality

Survey respondents positively endorsed the relevance of the resource content for meeting the learning needs and outcomes of learners (‘strongly agree’ n = 6; 33%; ‘agree’ n = 8; 50%; ‘partially agree’ n = 3; 17%). All respondents ‘agreed’ or ‘strongly agreed’ that the resource enabled learners to have an increased understanding of the experiences of people living with mental health issues, and similarly all respondents ‘agreed’ or ‘strongly agreed’ that the resource met a gap in education resources regarding people living with mental ill-health.

One of the study objectives was to identify barriers and facilitators to using the resource. Participants who had used the resource reported that having free access to the resource contributed to its utility. The online nature of the resource also enhanced access to and use of the materials. The flexible nature of the resource and the different stories and themes were also perceived to be a strength of the resource enabling educators to choose the story/theme that best aligned with the learners/students and the identified learning outcomes. Respondents noted that the collaborative co-design approach to development of the resource ensured it was both authentic to lived experience, evidence based, academically supported, and professionally presented.

Responses from both the surveys and the interviews demonstrated the resource was being used in a variety of different ways including as part of class activities, as preparation for class activities, as a component of staff induction programs, and to enhance staff professional development activities. It was also being used to achieve a range of specific learning outcomes identified by educators including:

• Developing a better understanding of mental health and mental ill-health;

• Learning about voice hearing and human distress;

• Understanding trauma and the impact of trauma;

• Developing clinical skills for health professionals working in mental health;

• Orientation and induction to particular work settings; and.

• Developing skills for working and communicating with individuals.

Respondents who were using the resource generally reported feeling confident embedding the resource in their teaching (‘strongly agree’ 50%; ‘agree’ 33%; ‘partially agree’ 17%). It was noted that careful planning regarding how the resource would be used was needed. There was a focus on the importance of the educator being familiar with materials prior to using them with learners, and to consider how they would create a safe space for learners.

The responses indicated that all four stories were being used with one story being used more frequently than the other three. The decision to use a particular lived experience story related to alignment with specific learning outcomes, selection of story based on gender, a perception of some stories being more or less confronting for learners to engage with, ease of integrating the story and content into course materials, resonance with learners, and preparation for future work settings.

Findings part two – qualitative survey and interview data

Scope of application

Interview participants discussed how the resource could be adapted to suit specific learning outcomes, a range of learning situations and settings, and could be delivered using a variety of approaches (for example face-to-face or online). Interviewee 3 talked about how they “match the content to the audience…I can do a quick session with discussion…or add the films together for a longer session” highlighting the flexible nature of the resource. In wanting to expose learners to alternatives to the medical model, Interviewee 5 stated how they wanted to “tip the scales towards lived experience, away from the medical model, and this resource allows us to do this.”

Similar to the findings from the survey, interview participants were using the resource with a range of health disciplines. Some participants provided suggestions for other disciplines who they believed would also benefit from engaging with the resource as part of their education:

“I volunteer for the [ambulance service] and hope to get the training as part of their mental health education in the next twelve months…I think the fire brigade is a less obvious target but I may well target them later… the people who developed the Life Education Vans… I will also meet with them to see if they are able to use the product” (Interviewee 3).

Future resource enhancement

The primary area for future resource enhancement was inclusion of a greater diversity of lived experiences, including contributions from people from culturally diverse backgrounds. In particular, the voice of Indigenous Australian peoples was identified as a gap in currently available education resources. As with survey responses, there were suggestions from the interview participants regarding increasing the diversity of the stories to better reflect contemporary society, for example inclusion of “the experience of someone who is LBGTIQ + and a voice hearer… or an older male person” (Interviewee 3).The resource lists included in the Facilitators’ Guide are predominantly specific to Australia and may be less relevant to international settings; it was suggested that consideration be given to expanding the resource lists.

A range of suggestions were provided to enhance ongoing development of the resource. One interviewee suggested it would be advantageous for the people with lived experience who feature in the resource to be more available for live classroom performance:

“I am reluctant to share someone’s story to that depth without bringing them into the room to elaborate … because that content produces so many questions. It’s too risky for me as an educator to take that position of knowledge and try to answer on behalf of the person” (Interviewee 1).

However, interviewees recognised the time commitment and potential travel this may require, and that this approach would require funding that may be difficult to secure.

While some participants liked the flexibility of the resource and the scope, they had to design how they would use the content within their education sessions and this prompted other participants to suggest that a more structured or modularised approach to the resource would be beneficial. Further development of the Facilitators’ Guide was endorsed along with the inclusion of more references, structured learning activities, and key learning outcomes associated with each story and/or theme.

There was some discussion about the accessibility of the resource – at the time of the interviews users were required to register and then be approved for use. There were mixed feelings about making the resource open access “I would love it to be like an open tool with everyone watching. I don’t think my students need my opinion to engage with it. I don’t think we need an institution to mediate” (Interviewee 1). In response to similar feedback from a range of sources, the resource now has open access to any person who registers.

Creating a safe learning environment

A recurrent theme arising from the qualitative data related to the need for focused attention on creating a safe learning environment when using the resource. Participants discussed that exploring traumatic human experiences such as those presented in the resource may trigger previous experiences and emotions for some learners and educators: “I acknowledge that the experience in the videos might be similar to something our students and ourselves have experienced” (Interviewee 1). For other learners and educators, it was noted this may be their first exposure to material similar to that covered in the resource. Creating safe environments to explore the range of responses that may occur was highlighted by participants as being an important consideration. The participants acknowledged that some of the content in the resource is confronting, however most participants perceived that exposing learners to this content in a safe environment and providing opportunity for discussion and exploration prior to undertaking a supervised placement or securing employment was better than “letting them loose without this education” (Interviewee 3). The interview participants outlined various strategies they use to facilitate safety, self-care and the care of the learners when using the resource, for example:

“I trust them enough that if it’s uncomfortable and it moves them, they can leave, and they will come back and we will have a dialogue” (Interviewee 1).

“People are asked if they leave the room to give a thumbs up if ok and thumbs down if distressed. I talk to the importance of ‘hearing and listening’ with the heart and how to manage emotions that may happen in response” (Interviewee 3).

“You need to provide time for [learners] to sit with emotion, connect with these emotions and to share and discuss an embodied experience… Run grounding activities after watching the films…look after yourself” (Interviewee 5).

Impact of the resource

The overwhelming feedback from educators about the resource related to the powerful impact it has on those who engage with it – including both learners and educators:

“There was a lot of emotion in the room. It really rings true…it resonated…it was relatable…it is such a powerful thing. People are gripped – and wow!” (Interviewee 5).

“This really punches the whole point home” (Interviewee 2).

The stories of those with lived experience, coupled with the artistic elements were perceived by educators to make the learning activities impactful and memorable, and the message being presented “hearable.” It was perceived that through using the resource learners improved their understanding of trauma from the perspectives of people with lived experience, were presented with alternatives to deficit discourses, and were encouraged to consider and advocate for diverse approaches to mental health issues. The impact of one of the stories on a student nurse was described:

“Ben’s bullying story was very powerful with one student nurse… After viewing, he was teary, could relate to parts of the story…big attitude adjustment.” (Interviewee 3).

The topics addressed in the resource were perceived to provide opportunities to develop students’ empathy and facilitate students’ use of person-first language and approaches to engagement, as Interviewee 4 stated: “The program works…it builds empathy.” Of importance, the participants perceived that the hope and opportunity for recovery described by people with lived experience challenged commonly held misconceptions and stigma associated with people experiencing mental ill-health.