‘Simply do it.’: Results from an online questionnaire to inform a community-based menopause education and support programme in the UK,InTune

Study design

This was primarily a quantitative cross-sectional questionnaire with some free-text responses. It was administered online using Qualtrics (Qualtrics, Provo, UT) between 16th January and 22nd March 2024.

The questionnaire was designed by the authors (JH, NK, ST) and informed by the team’s previous research, existing literature, project workshops and focus group discussions. It was further refined through discussions with our Expert Advisory Group. ¹⁶ It covered demographic characteristics, menopause preparedness and opinions and recommendations for programme design (supplemental file), with space for free-text responses. We tested the questionnaire with 40 volunteers in January 2024. As no major changes to questionnaire design were required, we included these responses in this paper.

Recruitment

We recruited participants online purposively via professional and personal networks, and social media of the authors (WhatsApp, Facebook, Instagram, X/Twitter and LinkedIn). To take part, people had to give electronic informed consent (after reading an information sheet) and confirm they met inclusion criteria (age ≥18 years and currently experiencing or could potentially experience menopause (including being a woman, transgender man, or non-binary person)). The survey was only available in English but was open to non-UK residents.

Data analysis

Only those respondents who consented and submitted their questionnaires were included which allowed people to withdraw before submission. Quantitative and qualitative data were kept analytically distinct. We used qualitative data to contextualise quantitative findings, and for triangulation with quantitative findings. Quantitative data were analysed in Stata (StataCorp. 2023. Stata Statistical Software: Release 18. College Station, TX: StataCorp LLC) to produce descriptive statistics and bivariate analyses. Free-text responses were imported into the qualitative data analysis software NVivo and analysed thematically using a reflexive thematic approach. ¹⁸ This involved familiarising ourselves with free-text responses, generating initial codes, and then categorising into sub-themes and themes. Any disagreements about coding and/or interpretation were discussed until consensus was reached. Findings were discussed among the team, and feedback elicited from Expert Advisory Group members.

Positionality statement

We acknowledge that values, and assumptions as researchers, which are shaped by our social identities and life experiences, will influence our research questions, methodological approaches, and interpretation. The work reported in this paper was primarily designed, conducted and analysed by JH (a cisgender, mixed-race, postmenopausal woman with a professional background as an academic in reproductive health, and ST (a cisgender, British Pakistani, perimenopausal woman with a professional background as a sexual health physician and public health academic). Both JH and ST have led research on menopause for 10 years. Preliminary analysis of data was undertaken by MM (a cisgender, Pakistani, premenopausal woman and MSc student).

Ethics

Ethical approval for this study was granted by the UCL Research Ethics Committee (reference 9831/012).

Menopause informational and support needs

Nearly two-thirds of participants (n = 992, 63.1%) reported negative feelings about peri- and/or postmenopause; only 5.3% (n = 83) reported having positive feelings towards this stage of life. Nearly one-quarter (n = 346, 21.9%) reported feeling well informed about the menopause transition, with 56.6% (n = 896) and 20.8% (n = 329) stating they were either somewhat informed or not at all informed, respectively. Several participants shared the challenges they faced in actively searching for information that was relevant to them. The broad range, and often non-specific, nature of menopause-related symptoms added to the difficulty of navigating this process.

‘[I] have to seek out information relevant to you from different sources. So many symptoms linked to menopause never know what is attributable to menopause and what is not. Limited/untested options about what to do about them’.

Some highlighted the significant effort required to find reliable information about menopause and distinguish facts from misinformation:

‘I have found info very useful but I have done lots of research myself, so I am quite discerning in what I read/believe. There is a lot of nonsense/incorrect info floating around in the media too’.

Participants described existing information as variable in quality, leading to mistrust and confusion:

‘The info out there is of varying quality, some is rubbish, some is backed by science, some is intended just for marketing to sell supplements etc. It must be difficult for many women to know what to rely on’.

Social media was identified as a platform where misinformation about menopause was a particular risk:

‘There is a lot of variability and false information especially in private Facebook groups’.

Another concern was the recent proliferation of information about menopause, which largely focused on negative aspects, resulting in anxiety:

‘A lot of information now scares women as they assume they are going to be faced with all symptoms whereas in practice all women experience the menopause and perimenopause differently’.

The vast majority of respondents (n = 1479, 92.7%) had sought information about menopause from a wide variety of sources (Figure 1). The most commonly accessed source of information was professional medical organisations (n = 983, 61.6%), followed by social media (n = 846, 53.0%, with Instagram the most popular) and friends and family (n = 811, 50.8%):

‘Everything I know about menopause I learnt on Instagram from other women’.

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Figure 1.

Different sources of information about menopause (proportion of respondents who reported accessing, n = 1596).

Nearly half of participants had gone to a healthcare professional for information (n = 780). Many described feeling dismissed by healthcare professionals and/or receiving poor advice:

‘I’ve experienced a lot of doubt from the medical profession that my experience of being peri menopausal isn’t actual. There seems to be little information and no real care or time to offer options to the patient to choose their preferred treatment’.

In contrast, support groups (often online) were an important source of information and help:

‘I only feel informed now because of the Facebook support groups I have joined’.

Those with long-term conditions, disability or who had experienced complex menopause (such as iatrogenic or early menopause) described a paucity of information tailored to their specific needs:

‘There is a lack of information for my circumstances - had early menopause due to surgery for ovarian cancer. Most women with ovarian cancer are older and postmenopause so the pathways are not in place for rarer cases’.

For these populations, peer support was especially powerful, helping them understand the intersectional experiences of menopause in the context of other medical conditions:

‘I’m now part of a menopause diabetes group on SoMe [social media] which has helped me understand that I’m not the only one with certain symptoms and feelings’.

Nearly two-thirds of respondents (n = 1024, 64.8%) reported that the information they accessed had been helpful, although many (n = 934, 59.1%) did not feel menopause support and information was tailored to their specific needs. Those from minoritised groups (sexually minoritised, gender diverse, ethnically minoritised and/or living with a disability or long-term condition) were less likely to find the information they had accessed useful (all p < .05). People living with a disability or long-term condition were more likely than those without a disability to report that current menopause resources were not tailored to them (p < .001), as were those who were ethnically minoritised, although this was not statistically significant (p = .087).

Views and preferences for a national menopause education and support programme

There was broad support among respondents for a UK-wide menopause and education support programme, with 91.9% reporting that such a programme was needed (n = 1459). A minority were unsure what the proposed programme could offer beyond what already exists:

‘What more am I getting on a 8 week course that a leaflet or Google couldn't tell us’.

Many felt that menopause education needed to reach a broad section of society to foster greater understanding and support for people during this phase of life:

‘Everyone needs to know what this is that us women of a certain age are going through. I find people have less patience with women in their 50s etc. Young people especially but not only them, some men laugh at us, or I have been told to stop blaming everything on the menopause. Shop assistants are the worse, when I am experiencing brain fog in the supermarket they stand around me and act as if I am stealing something’.

Programme delivery

The most popular mode of delivery for the proposed programme was either online and/or face-to-face in a group setting, with 92.0% (n = 1468) and 73.1% (n = 1166), respectively, expressing support for these options; only 742 (46.5%) reported a desire for an individual in-person programme. Accessing such a programme at work was less popular with 46.1% (n = 735), 27.6% (n = 441) and 53.3% (n = 850) saying they would want to attend in-person sessions in a group and/or individually, or online, via employers, respectively. Some participants had concerns that their employers would engage with the programme ‘Getting employers on board - the menopause is trivialised in many situations’ and some expressed concerns about delivery in the workplace ‘some people might not feel comfortable joining a program with colleagues’. Other suggestions included healthcare providers (including primary care, and at the over 40s health check), community women’s groups, gyms, and schools.

For the programme to support perimenopause symptoms, over half of participants replied that sessions should be 1 h long (58.3%, n = 921) with a further 21.1% (n = 334) stating they should be between one and one and a half hours (Table 2). The most popular options for frequency and number of sessions were once a week (n = 590, 37.8%) for between two and four sessions (n = 731, 46.8%). People highlighted the importance of acknowledging the competing priorities many people have at this stage in life, and the need to tailor the programme so it was not ‘time intensive’:

‘Menopausal women (like me) are often very time poor - we have jobs and families (children and parents) who rely on us for support. Please provide support in a format that isn't time intensive’.

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Table 2.

Preferences for programme delivery.

	N a (%)
Duration of sessions (n = 1581)
1 h	921 (58.3)
1.5 h	334 (21.1)
2 h	132 (8.4)
2.5 h	19 (1.2)
Other	175 (11.1)
Number of sessions (n = 1562)
1	47 (3.0)
2–4	731 (46.8)
5–8	603 (38.6)
9–10	97 (6.2)
>10	84 (5.4)
Frequency of sessions (n = 1562)
Once a week	590 (37.8)
Once every 2 weeks	507 (32.5)
Once a month	341 (21.8)
Other	124 (7.9)

^aNumbers vary due to non-response.

Respondents identified engagement as a particular challenge, requiring careful thought about how to maintain interest over a number of weeks. One suggestion was to incorporate other activities, such as yoga or massage, so that sessions were fun:

‘If you incorporate some really fun or nurturing aspects to the training…maybe a yoga session at the end or an exercise session or a head massage or something, it could make it more appealing and show how important self-care is’.

Over two-thirds of respondents (n = 1091, 68.4%) said they would like the programme to be delivered by a non-healthcare provider (HCP) with menopause training, whereas 56.7% (n = 905) and 47.3% (n = 755) thought that a nurse or doctor should deliver it, respectively. Regardless of who delivered the programme, many respondents emphasised the need for facilitators to have appropriate training about menopause to avoid unintended harm:

‘An inadequate trainer will make people feel worse about themselves and the menopause. [You need to] ensure the trainer has a full and valid connection to the menopause’.

A few also indicated a preference for facilitators with lived experience of menopause:

‘I want to learn from people who have lived experience. I don’t want to be lectured by a 35-year-old doctor with no menopause experience, as my GP is’.

Programme content

Respondents highlighted the challenge of developing a programme which could cater to the diversity of experiences of menopause and management strategies, which varies between individuals:

‘It seems everyone has their own symptoms [and] experiences so it might be hard to tailor everything but start with the basics and offer something separate on more specific topics’.

Others mentioned the importance of a holistic approach to menopause health and wellbeing, which does not focus on hormone replacement therapy (HRT) as the only solution:

‘The differences in women's experiences across the UK is huge. HRT isn’t for everyone and often works for a few months and then stops working…health issues aren't being picked up because HRT is thrown at everything’.

Another concern was the lack of awareness of menopause and its symptoms, which may result in individuals not identifying themselves as potentially eligible for a menopause education and support programme:

‘You have to know you are in menopause to do it [the programme]. A big problem is that people (particularly if they are younger) don’t know they are going through menopause. I therefore think there needs to be a lot of awareness made to younger people (in their 30 s) so that they are informed enough to identify when they may have entered perimenopause’.

We asked participants to indicate which topics they would like to see covered within the proposed programme; the most popular topics were menopause symptoms (n = 1533, 96.1%), management (n = 1517, 95.1%) and menopause physiological and social changes (n = 1503, 94.2%) (Figure 2). Other topics suggested included navigating menopause in the workplace and lesser-known symptoms.OPEN IN VIEWER

Respondents stated a key focus must be ensuring information is accessible and accurate, and that the programme is based on ‘latest scientific evidence and [aims to] debunk some of the myths’. This was seen as especially important in the context of a perceived overwhelming amount of often conflicting information about menopause in the public domain.

Some participants expressed concern about potential conflicts of interest, and a need for a funding structure that guaranteed that advice was truly independent:

‘[There is a] risk of some companies funding and then skewing education to their advantage’.

Building an inclusive programme

Participants emphasised the importance of developing a programme that was accessible to all, regardless of gender, ethnicity, age, sexuality, disability status and/or neurodivergence. They cited examples of groups who are currently neglected in discussions and support around menopause (including people who are socioeconomically marginalised, people from LGBTQIA+ communities, and those who living with neurodivergence). Experiences of exclusion among people from racially minoritised communities was particularly highlighted:

‘I feel in the UK that talks and studies tend to be about/by white people. Black people and POC [people of colour] aren’t as well represented, and our experiences of menopause can differ to [people of] white or other ethnicities’.

Participants believed that the programme ‘needs to be accessible to all women regards of wealth, education or social position’. Developing an inclusive programme that doesn’t amplify existing menopause health inequities, requires close partnership with affected communities:

‘How [do you] engage with those usually left out of the menopause conversation? Basically how to make it NOT “Mumsnet for Menopause.” This needs the invitation to also come from those within these communities - Black women, Asian women, queer people, disabled people, etc’.

One way of doing this is through co-design/co-production, a collaborative process where stakeholders, including end users and professionals, work together to develop an intervention, ensuring diverse perspectives are taken into account:

‘Definitely co-produce this course with people from different ethnicities, faith backgrounds, and ages who have lived experience of the condition’.

Respondents recommended that facilitators be from affected communities (i.e. living with a disability if delivering a programme to others living with a disability), or at the very least undergo training in inclusive practice such as cultural competence and gender inclusivity:

‘I think the trainers need to be trained on providing culturally competent information - women from different ethnicities may have different barriers or stigma around participating and sharing in a group or community forum’.

Other suggestions to ensure the programme reached and met the needs of diverse groups included multilingual resources, multiple formats, step-free access, and British Sign Language (BSL) interpreters.

Some respondents identified neurodiversity as an often-overlooked factor that particularly impacted experiences of menopause and access to support:

‘Do keep in mind that most neurodivergent people in the main age range for perimenopause/menopause won’t have been diagnosed. Raising awareness of the possibility of this is really important as existing difficulties associated with being autistic or [having] ADHD [attention deficit hyperactivity disorder] can be exacerbated by hormonal fluctuations and social aspects of menopause’.

Material and delivery must therefore be designed to meet the needs of neurodiverse people, for example, considering online delivery.

Finally, respondents cautioned us to consider other groups who are often not included in current conversations and support around menopause. This included people who experience menopause at a young age, those who have experienced cancer, iatrogenic menopause, and those who have not had children:

‘Please acknowledge the added aspect of those childless women experiencing menopause - childless by choice or circumstance. [It] can be difficult for those who have never conceived to finally face the fact that this would no longer be biologically possible’.