Data analysis revealed six major themes across almost all phases of the co-design process. These themes included lack of awareness, lack of knowledge, limited and stigmatising services, learning from lived experience, resource impact and resource development; each theme is explored below and illustrative quotes are presented in Table 1.

Table 1 Themes and illustrative quotes from all four phases of the co-design processThemesTheme: lack of awareness

Most participants reported that they had very little prior awareness of menopause, and its relationship with EDs, across all four phases of the co-design. This perceived lack of preparation for menopause was seemingly driven by menopause being considered a societal taboo topic and a subsequent lack of awareness raising for women at younger ages (Quotes 1–4). This lack of awareness also extended to the greater community, with participants highlighting the importance of improving the understanding of support networks, such as family and friends (Quotes 3 and 4). Participants emphasised the need for a resource to promote the conversation, teaching and normalising of menopause and midlife EDs to improve awareness for all (Quotes 3 and 4). Subsequently, the tone and content of the resource aimed to promote this message, and a section targeting support networks was added to the mock-ups in the develop (third) phase.

Theme: lack of knowledge

A prominent theme across all phases was confusion regarding the overlap of physical and psychological experiences of the menopause transition and EDs, and difficulties in finding answers to questions on these topics. In the first and second phases (discover and define), participants spoke in depth of their frustration of having no explanation of what was happening in their bodies, why they were experiencing a range of symptoms and how to best address them (Quotes 5 and 6). Adding to their frustration and confusion, participants commonly reported that health professionals were lacking in education and training about menopause transition and concurrent EDs (Quote 7). Participants reported that when seeking answers and support, health professionals were often unable to explain or treat their concerns.

Through the first to third phases (discover, define and develop), participants emphasised that the central focus of the resource must be explaining the overlap of menopause and EDs, including the hormonal changes, symptoms and treatments (Quote 5). It was important to participants that the resource also supported the learning of health professionals (Quote 7). These reports led to the inclusion of two additional sections in the resource during the third and fourth phases (develop and deliver); one that compared the menopause transition and ED experiences, and one that directly addressed health professionals.

Theme: limiting and stigmatising services

Consistently reported throughout all four phases, participants expressed disappointment and frustration with the lack of services that catered to the needs of people experiencing an ED during midlife and, specifically, the menopause transition. Participants reported that in midlife, they were lacking age-appropriate services that took into consideration their often longstanding EDs (Quotes 9–11). From the first phase (discover), current services were believed to be too heavily focused on alleviating physical manifestations of an ED, such as increasing weight (for underweight participants) and regulating eating behaviours. Participants with longstanding and complex EDs reported minimal interest or hope in trying to alleviate their EDs, and alternatively expressed preference for treatment options to focus more on improving quality-of-life with their ED (Quote 10). Consequently, in the second phase (define), in addition to evidence-based ED and menopause treatment options, exploration of the quality-of-life approach was proposed and content subsequently included in the mock-up (develop) and prototype (deliver) phases.

Across all phases of the co-design process, a recurring theme of feeling invalidated by health professionals and services was evident and that participants should have ‘known better’ by their more advanced age compared to younger people with EDs (Quotes 8–11). Participants consistently reported that their health professionals lacked compassion, and ignored or dismissed their concerns about the menopause transition by attributing all health concerns to their ED diagnosis (Quote 8 and 11). As a result, a section in the resource to directly address health professionals and highlight these concerns was included from the third phase (develop).

Theme: learning from lived experienceSubtheme: diversity

The extensive variety in people’s experiences of EDs, menopause and their overlap were emphasised throughout all phases. From the first phase (discover), participants highlighted how their experiences, including symptoms and feasible support options, differed greatly (Quotes 12 and 13). Thus, in all subsequent phases (define, develop and deliver), it was consistently reported that the resource must showcase this diversity in experiences and offer information that catered to all as much as possible (e.g., information for people experiencing “early menopause” around the age of 40 [8]). Consequently, frequent messages of diversity were included in the final resource and stereotypical experiences were deemphasised.

Subtheme: lived experience voice

In fostering this message of diverse experiences, the value in hearing and learning from people who had experienced an ED during the menopause transition was frequently discussed throughout all phases of the co-design (Quotes 14 and 15). In the first phase (discover), when discussing what was helpful in participants’ experiences of menopause and EDs, connecting and learning from peers was consistently reported. Furthermore, participants emphasised how the value of learning from diverse lived experience should also be applied to health professionals (Quote 14). Consequently, across the second to fourth phases (define, develop and deliver), a number of additions were proposed and implemented to the resource to foster the voice of lived experience. These additions included explicitly stating the contribution of participants in the development of the resource, interspersing video and written lived experience stories throughout the resource, and catering the resource to health professionals in addition to people experiencing an ED during menopause to ensure that all stakeholders were learning from lived experience.

Theme: resource impactSubtheme: education

In response to the lack of knowledge reported by all participants, it was highlighted in the first and second phases (discover and define) that the resource must provide answers and address confusion about the overlapping experience of EDs and menopause transition (Quotes 16 and 17). In the third and fourth phases (develop and deliver), participants expressed positive feedback that the information (text, diagrams, videos) included in mock-up and prototype versions of the resource were comprehensive and answered their questions about what happens in the body during EDs and menopause and how these can be treated (Quote 18).

Subtheme: empowerment

In the second phase (define), when aiming to conceptualise if and how an online resource could address participant’s previously reported concerns from phase one (discover), it was reported that a resource could equip people experiencing an ED during the menopause transition with the knowledge and pathways to seek treatment and support further learning. Participants reported feelings of excitement and motivation to learn more, and that they could use the information they learned from the resource to advocate for their treatment with their health professional teams (Quote 19). Fostering this goal of empowerment, feedback from the third phase (develop) included that the resource encouraged further reading and learning, provoked action and would help with self-advocacy during treatment seeking (Quote 20). The resource was further reported (deliver phase) to connect participants with treatment and support pathways of which they were not previously aware (Quote 21). To consolidate and optimise this sense of empowerment in the fourth phase (deliver), participants requested a help-seeking guide/tips to follow when treatment seeking (Quote 22). Participants wanted further support on the information they should present to their health professionals (particularly in primary care settings) and the medical tests/support options to be explored. This guide was developed and included in the final resource.

Theme: resource developmentSubtheme: existing resources

In the first phase (discover), participants expressed the need for information and support that was tailored to the overlap and combined impact of EDs and menopause. When discussing the potential feasibility of an online resource, it was clearly emphasised that there was an abundance of existing ED focused resources, and another would be unnecessary and unhelpful for their particular age group and life stage (Quote 23). This extended to the inclusion of information about psychological therapies, particularly enhanced cognitive behaviour therapy (CBT-E), which all participants stated had been an ineffective form of treatment for them despite being the first line treatment for adults with EDs (Quote 25). Across the second and third phases (define and develop), participants continued to emphasise that the resource should target the association between EDs and the menopause transition (Quote 24), rather than exploring them separately. This feedback resulted in the creation of an additional resource section that addressed the overlap of EDs and menopause during the third phase (develop). In the fourth phase (deliver), participants did not continue to emphasise the need for information on the overlap, rather reporting that the resource was comprehensive and informative (Quote 26). It must be noted that while participants tended to express that they were not interested in the introductory sections of the resource that defined EDs and menopause separately, a shortened version of this information remained in the resource to ensure that all people accessing the resource, who may not have prior knowledge, had access to all the relevant information.

Subtheme: tone

From the earliest phases of the co-design process, participants reported that it was important for the resource to feel warm and inclusive, hopeful, authentic and straightforward (Quotes 27 and 28). In the later phases, participants reported that they felt the resource was sympathetic and friendly, gave them hope and encouragement, was honest and truthful about the experience of EDs during the menopause transition, and was easy to understand (Quote 29).

Subtheme: design/presentation

Across all four phases of the co-design, participants demonstrated differing opinions on how information should be presented to cater for different learning styles. To account for this diversity, information was presented in the resource using a combination of written, image, video and audio formats (Quotes 30 and 31). In the final phase (deliver), participants reported that the resource did not include too much text, and the image, video and audio content was engaging, helpful and easy to understand (Quote 32 and 33).