You are invited to take part in a research study. Please read the description carefully. 

What is the purpose of this study? 

The purpose of the Deaf Health Wales (DHW) project is to address the health disparities faced by deaf individuals in Wales, particularly those who use British Sign Language (BSL). Through a collaborative effort between academic institutions, deaf organisations, and health boards, this project aims to improve access to healthcare services, enhance interpreting services, and develop community-led solutions and resources to improve the overall health and wellbeing of the Welsh deaf community. The study seeks to co-design interventions and develop resources with the deaf community to ensure that solutions are culturally appropriate and linguistically accessible. 

What is the study about? 

This study focuses on understanding and improving the health and wellbeing of deaf people in Wales. It involves several research hubs including public health, mental health, interpreting services, language and communication, and law and human rights. The study will gather feedback from deaf individuals through focus groups, interviews, and surveys, and will develop resources, including BSL video guides and online dictionaries to improve accessibility. The study also aims to evaluate existing services, identify barriers to healthcare, and recommend policy changes to better meet the needs of the deaf community.

You will help co-design new solutions by taking part in public events, interviews, or recordings. Your input will directly shape community-led resources and future policy recommendations. 

What if I don’t want to take part? 

Participation in this study is completely voluntary, and you can decide not to participate at any time without providing a reason. If you choose to withdraw, any data collected up until that point will be handled according to your wishes, either removed or anonymised. You will not face any consequences for withdrawing, and your involvement or lack thereof will not affect your relationship with the research team. 

If you withdraw, any video or audio recordings will be handled according to your preferences. You can choose whether they are deleted, anonymised, or retained for limited use. 

Please be aware that it may not always be possible to delete your data. For instance, if your data is included in a research study, it cannot be deleted after the study has been published. Additionally, we cannot guarantee that data deleted from the internet is entirely eliminated, as it may have been shared or downloaded and could still be accessible elsewhere online. 

Will my taking part in the study be kept confidential? 

Yes, all information you provide during the study will be treated with strict confidentiality. Data will be stored securely and anonymised wherever possible. Personal identifiers will not be shared in any reports, publications, or presentations. If video or audio recordings are made, they will be handled according to your preferences, and you will have the opportunity to approve or withdraw your consent for their use. 

You will be asked to give clear consent for how any recordings (such as interviews or public contributions) are used. You can choose whether your name is included or kept anonymous. 

What will happen to my data? 

Your data will be stored securely and used solely for the purposes of this research. For most participants, data will be anonymised to protect your identity. Any personal data that is collected will be stored in a secure database with restricted access. After the study is completed, anonymised data may be used in academic publications, reports, or presentations. You have the right to withdraw your consent at any time, and any data collected prior to withdrawal will either be removed or anonymised, as per your request. 

With your explicit consent, recordings or transcripts may be shared online, used in teaching, or stored in a public archive. You can decide how your contribution is shared and whether your name is included. 

Is there anything else I should know? 

This study may involve some questions or topics that some participants find sensitive. If you feel uncomfortable with any aspect of the research, you can withdraw at any time without penalty. Additionally, if you have any concerns about your emotional or mental wellbeing during the study, support resources will be made available. Please feel free to contact the project team if you have any questions or concerns about your involvement. 

Who is running and paying for the study? 

The DHW project is being led by Bangor University, Swansea University, UWE Bristol, and other collaborating institutions. It is funded by the Arts and Humanities Research Council (AHRC) as part of a larger initiative aimed at improving health and care systems. The project is also supported by several partner organisations, including the British Deaf Association, Public Health Wales, and Betsi Cadwaladr University Health Board. 

Who has reviewed the study? 

This study has been reviewed and approved by the research ethics committees of the participating universities. The DHW team is committed to upholding the highest standards of ethical research and has worked closely with community groups and advisory panels to ensure the research is aligned with best practices and ethical guidelines. The Lived Experience Advisory Panel (LEAP), composed of members of the Welsh deaf community, also provides regular feedback and guidance. 

Who do I contact if I have concerns about the study? 

If you have any questions or concerns about your participation in this study, please contact the Principal Investigator, Dr Christopher Shank, in English, Welsh or BSL at c.shank@bangor.ac.uk. If you have concerns about the study that cannot be addressed by the research team, you can contact the University Ethics Committee at cahssethics@bangor.ac.uk for further assistance. 

Bangor University’s ‘Code of Practice for the Assurance of Academic Quality and Standards of Research Programmes’ (Code 03) can be accessed here.