Wave 1 – Report 2020

How are we collecting data?

Participants complete an online annual survey which is automatically re-sent to them on the anniversary of their enrollment in the study. It is available in multiple languages and formats and participants can even switch languages/formats on a question-by-question basis to support understanding and access preferences.

The survey collects data on their lifestyle, education, current circumstances, identity and support. In addition, there are three standard assessments:

• a 5-question health assessment (EQ-5D-5L),
• a 7-question well-being assessment (the Short Warwick and Edinburgh Well-being Scale – SWEMWBS)
• and a 21-item self-determination questionnaire (the Self Determination Inventory Self-Report – SDI:SR).

Participants can stop and start at any time or do the whole thing at once. All parts of data collection are available in written English, written Welsh, Sign Supported Spoken English, Sign Supported Spoken Welsh and BSL, with the exception of the SDI:SR which not available in written Welsh/SSSW.

These formal assessments were chosen because they have been previously shown to work in signed languages and be suitable for deaf people. Using them will mean we can compare our findings with general population data.

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