Involving patients from minority ethnic groups in service delivery and research

1. Involving patients from minority ethnic groups in service delivery and research Deborah Fenlon RGN, PhDSenior Research Fellow Macmillan Survivorship Research Group 7th July 2010

2. Why should you involve diverse ethnicities? • 1 in 12 UK citizens are from diverse ethnic minority backgrounds (ONS, 2001) • Incidence of cancer varies by ethnicity • Services and treatments developed from cancer research may not be appropriate for patients from ethnic minorities if they are not involved in cancer studies • Patients from minority ethnic backgrounds want to be involved in research (Markman et al 2008) are no more likely to refuse, but are less likely to be invited to participate (Wendler et al 2006)

3. Diversity in UK • Majority of Indians speak and read English fluently • Young Chinese have high fluency in English • Older Chinese have low fluency • 68% Pakistani women (aged 50-74) read no language (2006) • Only 10% Bangladeshi women speak English

4. The Macmillan BME Study - Aims • What are the research attitudes, experiences and understandings of cancer patients from diverse ethnic backgrounds? • What are the potential barriers to involving people from diverse ethnic backgrounds in cancer research? • How can recruitment strategies for diverse ethnic groups be improved for cancer research?

5. Steering Group • Dr Jane Cope, National Cancer Research Institute • Damyanti Patel, National Network Coordinator, Black and Minority Ethnic Communities, Macmillan Cancer Support • Ali Orhan, Community Involvement Manager, The Prostate Cancer Charity • Dr Yasmin Gunaratnam • Prof Sheila Payne, Help the Hospices chair in Hospices Studies, University of Lancaster • Richard Lam, Macmillan Chinese Cancer Information: Chinese National Healthy Living Centre • Anne Croudass, Cancer Research UK Lead Nurse • Vivienne Townsend, Cancer Black Care • Christine Gratus, Research Partner

6. Method, participants and analysis • 22 cancer patients recruited, purposively sampled by ethnicity, preferred language, experience of research, gender, age (20s to 80s). • 8 research nurses recruited • Study employed narrative interviews (using an adapted Biographical Narrative Interpretive Method) and semi-structured interviews • Data analysed using holistic, content and thematic approaches

7. 3 largest minority ethnic categories in UK: • South Asian (6), • Chinese (7) • Black Caribbean/African (9) • Link researchers spoke English and one or more of Gujarati, Hindi, Punjabi, Urdu and Cantonese.

8. Patient identified barriers • Poor understanding of cancer and research • Culture of silence • Fear • Language / communication • Family involvement in decision making

9. Culture of silence ‘They are scared that if they take part then their name will become public and then everyone will know they have cancer.’ (Sita, South Asian breast cancer patient mid 50s)

10. Fear ‘But drug trial without reason, you don’t try. You would not take part in a drug trial. (Sushila, South Asian gynae patient in her 60s) ‘Oh no, no, I don’t want to be used as a guinea pig for things’ (Rose, Black Caribbean, quoting her mother)

11. Language ‘…they had to take a family member along and the member would often be a male, and they don’t want to talk about things with a male, so a lot of people didn’t attend a […] or just didn’t tell the family until things got too bad.’ (Rose, Black Caribbean, referring to breast or gynae cancer)

12. Role of family decision making ‘You do lose your decision power, trust me you do… Someone is taking your decision on your behalf like your father, your mother or your sister. That’s the case in Pakistan, you don’t take your decisions… It’s like being in a council in every house you know. Every house has their own council and they have the head as well. The head can be a father, if he’s in a strong position, or mother if she’s stronger than the father, or an elder brother who is stronger than both mother and father. Whoever’s the stronger will lead the family and he will take the decisions. What happens especially in Pakistan, I can tell you, that if you have been diagnosed with any illness… They will go to a doctor and then they will discuss at home; and at home whoever is coming to visit you, he will pass on his special views. Don’t know nothing about anything and he will add on his views.’ (Tariq, South Asian Leukemia patient, mid 30s)

13. Eurocentric focus of cancer research • Process of informed consent and recruitment based on: • Individualism, independence and autonomous decision making • What impact will this have on me? • For many minority ethnic groups, decision making concerning research participation based on: • Consensus, inter-dependence, family based decision making • What impact will this have on my family?

14. Research nurse identified barriers • Challenge of achieving informed consent, largely due to language difficulties • Family as barrier (although could be a boon) • Lack of cultural awareness on the part of the nurse • Limited access to translated study material • Challenge of accessing translator services • Health care professionals’ stigmatised views of ethnic minorities • Pressures to recruit, e.g. NCRN accrual

15. Cultural sensitivity ‘They are normal scales, such as HADS… they have been regarded as culturally insensitive… we are from what I’m gathering, too abrupt and that abruptness shows a lack of respect.’ (Sharon, research nurse)

16. ‘ You are just never sure how much gets through when the family is translating.’ (Susan, research nurse)

17. ‘It was very difficult to focus on the father because the sons were sort of standing over him and you know you just didn’t know quite who to talk to really, you know, although you knew the father couldn’t understand English, so you’d got to speak to the sons really. And they were saying “yes, yes, we know, we’ve been told about the trial”’ (Anne, research nurse)

18. Family (nurse perspective) ‘There’s often coercion on the family side ‘cos they really want them to do the trial rather than the patient making the decision. And I don’t particularly feel comfortable with that either. So if I feel that it’s not really the patient’s understanding that’s making them take part in a trial, I tend to just leave them. (Linda, research nurse)

19. ‘… I suppose really in the past I have just tended to leave those patients unless I am completely confident that they’ve got an understanding of basic English.’ (Tina, research nurse)

20. Recommendations • Improved communication between patients and nurses • Increased provision and accessibility of professional independent interpreters • Improve the literature, not just to interpret leaflets but to aim at minority ethnic groups, perhaps ethnic role models • Increase trust between patients and health professionals. • Ensure nurses show patients everything they will need to do to be involved in trials e.g. showing questionnaires etc.

21. Recommendations • Improved patients understanding of cancer and research • Facilitate understanding of research concepts such as equipoise and confidentiality • Facilitate change in understanding of cancer research to be about hope, the possibility of improving life and benefit to family as well as society • Greater working through the community to enhance understanding of research • Access to peer support and the sharing of research participation experiences

22. Examples of education initiatives • Lectures or seminars in different languages • Community based talks with entertainment • Booklets and newsletters • Advertising campaigns • Celebrity involvement in awareness raising • Media campaigns

23. Recommendations • Improved nurses understanding of difference cultures • Improved training about different cultures, particularly with reference to the role of the family in society • Working with minority ethnic communities to identify research priorities and access issues • Sharing successes and challenges of recruiting minority ethnic patients into research with other research nurses

24. Recommendations • Improved recruitment system and facilities • Greater institutional support e.g. research nurses to have more time to spend with potential minority ethnic participants and to prepare culturally sensitive documentation and arrange interpreters • Recruit research nurses from ethnic minority backgrounds • Address the socioeconomic issues, such as getting to the hospital, paying to participate in research, childcare etc. • May need to adapt the research to make it more accessible to patients e.g. outcome measures • Use of minority ethnic representatives in research e.g. in user reference groups

25. Discussion • Some problems are about language rather than culture • Some may be about socioeconomic status and education • Ethnic minority groups in UK from wide range of cultures and so individuals will have different needs • Each individual needs to be treated as an individual!

26. Questions raised • What is the role of the family in decision making around trial/treatment decision? • Should family members be relied on for interpretation for non English speaking patients? • Is it right to ask people from different cultural backgrounds to apply Western cultural norms to decision making?

27. Thank you The Macmillan BME Study Steering Group Macmillan Cancer Support The patient and research nurse participants Study collaborators (Dr Alex Mitchell, Dr Paul Symonds and their team, Leicester; Janyne Afseth and her team, Edinburgh; Jean Gilke and her team, Cancer Black Care; Usha Sidhpara and her team, Coping With Cancer)