Details of Study
Most women experience menopause a natural part of biological ageing. The experience of menopause is strongly influenced by the individual’s culture and belief systems and practices. Evidence shows significant variation across socio-cultural and religious backgrounds in the menopausal experience in terms of women’s views, understandings, behaviours and coping mechanisms. Further, existing research suggests that women from ethnic minorities often have different menopause experiences from their White counterparts, including menopause at earlier age, longer transition periods, and severity of symptoms.

In the UK, there are currently around 13 million women undergoing menopause, which is equivalent to a third of the entire UK female population. Women tend to seek information on menopause from different formal and informal resources, such as doctors, friends, the media and internet. Recent research shows that more than 90% of women reporting no education received about menopause at schools and over 60% only started looking for information once they began to experience menopausal symptoms.

Due to the menopause taboos, women tend to struggle in silence and menopause remains unaddressed carrying significant social and cultural stigma. Individuals from diverse communities (e.g., Asian, Black, Latina) tend to face further challenges to seek health information and support, due to cross-cultural communication barriers. Subsequently, it is more likely that perimenopausal and menopausal women from ethnic minorities are left with health needs not being met.

Trustworthy, tailored information resources are needed to be available and accessible to help raise awareness on menopause and improve the quality of life of midlife women. Advanced technologies can give women easier access to evidence-based information and support, and perhaps bridge the divide only if designed carefully to ensure its inclusivity by addressing the specific needs of women from less advantage and diverse subgroups.

However, Muslim minority women in the UK, regardless of their language and ethnicity backgrounds, are underrepresented in health research and little is known about their views and experiences of menopause. This study aims to explore UK-based, Muslim minority women’s views and experiences of menopause and gain deeper understanding of their management strategies and help-seeking behaviours for menopause.

We would like to invite you to participate in a face-to-face or online-based, informal group workshop(s) to gain your valuable insights on your menopause experience, including changes you want to see and what might help you to improve your individual journey, and whether you feel that using digital platforms would be appropriate to seek information and support on menopause.

During the workshop, you will be introduced to an example of a menopause app (Adora prototype) to gain your insights on and encourage you to think aloud about your needs and preferences. After the workshop, you will get a chance to try the app for free (optional).

I confirm that I am carrying out this research granted by UCL Innovation and Enterprise independently and that am not affiliated to the partner company ‘Adora’. The contribution of Adora (as digital health partner company) will be limited to sharing knowledge and samples (prototype) with the UCL researcher for the workshop session(s) and support facilitating the workshops.

No identifiable (personal) data will be shared outside UCL or with the third party (Adora). Where necessary, data will be pseudonymised by the UCL researcher then shared with other authenticated UCL researchers (supervisors/ senior researchers) and/or Adora (third party) on an encrypted file and subject access request to a specific entity for the purpose of discussing themes and findings of the research projects while ensuring the continued security of the data.

Anonymity and confidentiality
Your personal information including your name, contact details, audio recordings of the session will be handled and stored securely in accordance to the UK General Data Protection Regulation (GDPR). All transcripts including quotes extracted from the sessions will be pseudonymised so it will not be possible to identify any participants from the quotes used. Confidentiality cannot be guaranteed due to the group nature of the research.

The legal basis for collecting personal and special category (including health and ethnicity data): reference No Z6364106/2023/09/02 health research in line with UCL’s Data Protection Policy.

UCL General Privacy Notice for Participants and Researchers in Health and Care Research Studies
University College London (UCL) aims to conduct research to the highest standards of research integrity. Our research is underpinned by policies and procedures that ensure we comply with regulations and legislation that govern the conduct of research; this includes data protection legislation such as the General Data Protection Regulation (GDPR) and the Data Protection Act 2018 (DPA).

UCL uses personal data to conduct research to improve health, care and services. As a publicly funded organisation incorporated under a Royal Charter, we ensure that it is in the public interest when we use personal data from people who have agreed to take part in research. This means that when you agree to take part in a research study, we will use your personal data in the ways needed to conduct and analyse the research study.

Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. Most of our health and care research follows the UK Policy Framework for Health and Social Care Research.

How long data will be stored for?
According to UCL guidelines, all data will be stored securely for a minimal time period of the project. Identifiable personal contact details of participants and audio files of the workshops will be retained up to one year and then destroyed safely once the research is completed. Non-identifiable (pseudonymised) transcripts will be retained on UCL drives for up to 10 years.

In case you decide to drop out during the workshop or up to 4 weeks after the session, the written transcript will be edited so as not to include any of your data in the research findings. However, the original audio files cannot be deleted due to the nature of group discussion.

What if I have further questions, or if something goes wrong?
If by any means this study harms you or you wish to make a complaint about the conduct of the study, you can contact the PI for this project: f.hamilton@ucl.ac.uk, if no response received then the Chair of the Research Ethics Committee via ethics@ucl.ac.uk

Please feel free to discuss the information above with others if you wish or ask us if there is anything is not clear or further information is needed.

Can I take part if I don’t speak very good English?
The principal researcher is bilingual and can speak Arabic. The participant information sheet can be available in Arabic (upon request). Also, if you would like to take part but do not speak very good English, you can bring along a female friend or relative (+18 years) to help translate for you. They will also receive a £20 voucher + £10 travel compensation.