1. Ethical Challenges to Researching within a South Asian Context BY SANA RIZVI DOCTORAL RESEARCHER GRADUATE SCHOOL OF EDUCATION UNIVERSITY OF BRISTOL

2. Role of Gatekeepers in researching ethnic minorities What are Gatekeepers? Play a crucial role in qualitative research Specifically research that involves working with ethnic minorities by acting as mediators Allow continued access between the researcher and the participants.

3. Role of Gatekeepers in researching ethnic minorities “They have the power to deny access to the researcher and they may also influence whether individuals opt in and out of a process. By negotiating directly with prospective research participants, gatekeepers can speed up the recruitment process. By acting as cultural mediators or brokers they can help the researcher become more culturally competent” (McAreavey and Das, 2013, pg 116).

4. Role of Gatekeepers in researching ethnic minorities Gatekeepers can serve to legitimise the researcher within the community. Exercise an asymmetrical power relationship with the researchers Can influence various aspects of the research process: ◦What counts as good research ◦What constitutes a good participants. Power dynamics, difference of values and trust between the researcher and the gatekeeper therefore influences issues around inclusion/exclusion of an already marginalised minority group and how they are represented in the research.

5. Incentives to Engage in Research Why should Gatekeepers agree to facilitate your research process? Clark (2010) suggests three main mechanisms that support their engagement with research Political Representation Civic and Moral Responsibility Good Practice and Facilitating Change Other incentives/ rationale to engage in research might be Perceived affiliation with a group/institution Researcher positionality/status

6. The Gatekeepers in my Research with South Asian Families MA research at University of Birmingham, “Provision for Learners with SLD/PMLD from Ethnic Minority Families ”- (Rizvi and Limbrick, 2015) MPhil research at University of Cambridge, “Exploring South Asian Mothers’ Perception of their Child with Disability: Insights from a UK Context”- (Rizvi, 2015) PhD research at University of Bristol, “South Asian Maternal Perspectives on having a Child with a Special Educational Need and/or Disability”

7. Rationale for Research Engagement FORMAL GATEKEEPERS (SCHOOLS) IN PREVIOUS STUDIES Good Practice and Facilitating Change Affiliation with a Prestigious Academic Institution INFORMAL GATEKEEPERS (PARENT SUPPORT GROUP AND COMMUNITY) IN THE CURRENT STUDY Civic and Moral Responsibility Affiliation with Prestigious Academic Institution Perceived insider status to the South Asian community

8. Parental Mistrust and Coerced Consent May find school setting intimidating ◦based on their own schooling experiences ◦Or due to their current relationship with their child 'schools. Ethical issues may have arisen regarding ◦reliability of answers given in a school-setting, ◦parents may have felt obligated to answer in favour of the School or not to express dissatisfaction. Calls Consent into Question Issues in working with Formal Gatekeepers

9. Parental Mistrust and Coerced Consent Ethical concerns about gaining permission from the school and parents to examine the annual reviews. Verbal Consent & Written Parental Consent Forms Vulnerability of participants Compromise of trust and integrity Issues in working with Formal Gatekeepers

10. School Policy, Beliefs and Attitudes Communication about the Parent’s right to refuse and/or withdraw from the research at any time was communicated in English language ◦School insisted it was not their policy to communicate in different ethnic languages. Many parents did not have English as first language. Affected the degree to which consent, research objectives and research findings were understood by parents. Issues in working with Formal Gatekeepers

11. Confidentiality and Anonymity School’s role as a gatekeeper greatly affected issues around confidentiality and anonymity. ◦The participants were recruited as part of purposive sampling ◦Therefore schools were acutely aware of each family’s circumstances. Issues in working with Formal Gatekeepers

12. Surveillance Participants may feel they are being watched or judged by the school Researcher may come across as surveillance tool Affects participant responses as parents may feel they have to conform to certain notions of parenting and what ideal home-school relationship should be. Issues in working with Formal Gatekeepers

13. Issues in working with Informal Gatekeepers Confidentiality in a small community “In our community there is no such thing as confidentiality”- Mother Lack of procedure No proper records of participants. Snowballing to ask for accurate contact details can compromise anonymity. Influencing inclusion/exclusion criteria “I wouldn’t contact her if I were you”- Support Group Coordinator

14. Issues in working with Informal Gatekeepers Difference in values, beliefs and attitudes Its down to consanguinity, isn't it? – Support Group Coordinator 1 Assumed Community Representatives gatekeepers may be focused on maintaining their own integrity/status within the community and would not let a researcher jeopardise their position. They may only recruit participants that affirm their assumed status in the community.

15. Concluding Notes Inclusive research may often be intricately tied to the role of a gatekeeper. ‘Credible knowledge’ is dependant on the gatekeeper’s involvement Gatekeeper’s involvement may reduce the participant’s ownership or control in that research process.

16. Concluding Notes This is vital for research that claims to challenge stereotypes around an already marginalised community, as it can end up reinforcing these marginalised communities as problematised groups. Possible step forward  Situational Ethics: Taking context into account in order to be ethical Research must aim for inclusive knowledge base rather than following a set ethical template.

17. References Clark, T. (2011). Gaining and Maintaining Access Exploring the Mechanisms that Support and Challenge the Relationship between Gatekeepers and Researchers. Qualitative Social Work, 10(4), 485-502. Das, C., & McAreavey, R. (2013). A delicate balancing act: Negotiating with gatekeepers for ethical research when researching minority communities. International Journal of Qualitative Methods, 12(1), 113-131 Rizvi, S. and Limbrick, P. (2015). Provision for learners with SLD/PMLD from ethnic minority families. In The Routledge Companion to Severe, Profound and Multiple Learning, edited by Lacey, P., Ashdown, R., Jones, P., Lawson, H. and Pipe, M. Rizvi, S. (2015)(in press). Exploring British Pakistani mothers perception of their child with disability: insights from a UK context. Journal of Research in Special Educational Needs.

18. Thank you