1. Collecting data about service user satisfaction November 4th 2013 Workshop in London

2. Background 1.

3. 2 NIHR Thank you to National Institute for Health Research, School for Social Care Research for funding. This presentation presents independent research commissioned by the NIHR SSCR. The views expressed are those of the authors and not necessarily those of the NIHR SSCR or the DH, NIHR or NHS.

4. 3 Purpose of research National Institute for Health Research School of Social Care Research (NIHR SSCR) invitation for proposals: “People from black and ethnic minority groups report lower levels of satisfaction in both patient and service user experience surveys. If the equalities agenda is to be properly addressed in social care practice it is important to understand what lies behind these differences.”

5. 4 2010-11 Adult Social Care Survey Data Quality of life scores: White = 18.8 Asian = 17.2 Black = 17.7 Extremely or very satisfied with care services: White: 63% Asian: 53% Black: 52% Information and advice very easy to find: White: 26% Asian: 19% Black: 25% The way I am helped and treated makes me think and feel better about myself: White = 57% Asian = 59% Black = 57% 2011, The Health and Social Care Information Centre

6. 5 The key question Are ethnic differences in satisfaction caused by inconsistencies in the way different groups understand and respond to survey questions on satisfaction?

7. 6 Research questions How do respondents understand and go about answering questions about satisfaction with social care services? Does help from carers in completing questionnaires vary between groups and impact on how questions are answered? What impact does translation have on how questions are understood?

8. 7 Cognitive interviewing UnderstandingRecall JudgementResponse Ask the survey questions and then use probing to explore the question and answer process

9. 8 Types of interview Individual interviews with service users Individual interviews with carers or relatives Paired interviews Standard and Easy read questionnaires Interviews in English, Urdu and Bengali/Sylheti

10. Findings 2.

11. 10 There was no evidence that Bangladeshi and Pakistani groups are systematically understanding questions in a way which is different from white British people

12. Satisfaction Whether needs are being met What social services can offer Standards of care

13. 12 “Social Care Related Quality of Life” Control Personal Care Food and Drink Accommodation Personal Safety Social life How time is spent Dignity

14. 13 What else we found Carers’ involvement in answering questions can affect the answers given Quality of translation does impact on understandin g but may not explain differences Respondents think beyond the specific services being evaluated Some phrases are hard to understand but not only for BME groups No evidence of systematic differences in how BME groups understand and respond

15. 14 Help with the questionnaire Questionnaire is addressed to ‘you’. ‘Did you fill in this questionnaire by yourself or did you have help from someone else?’ 31% of White complete questionnaire by themselves 22% of Asian complete questionnaire by themselves

16. 15 Translation Adult Social Care Survey Standard translations available Low uptake of standard translations 15% had translation as type of help (all respondents) 36% Asians had translation as a type of help Cognitive interviews “It should be written in proper Urdu, if it is written like that then it would be good. It will be easier to read and understand …If you read it two or three times then you will understand it.”

17. 16 More than social care services Whole social care system GP, nurse, other health services Police Informal carers Or not including social care from direct payments

18. 17 Questionnaire issues Some lack of understanding of terms used: undermine adequate Two concepts in one question: Clean and comfortable Use of smiley faces on easy read

19. 18 Recommendations Consider tweaks to ASCOT questions where appropriate Revise and test translated versions survey questionnaire and obtain more information on their use Encourage all local authorities to provide ethnicity by more detailed breakdown in data Provide more guidance to carers on how to assist and the importance of recording service user views Consider what can be learnt from the easy read versions and whether their use can be extended

20. 19 If you want further information, please contact Margaret Blake Senior Research Director T. 020 7549 7009 E. Margaret.blake@natcen.ac.uk Visit us online: natcen.ac.uk Thank you