TOPIC GUIDE: Members of extended family

  • Introduction to the project
  • Explain structure of topic guide
  • Stress confidentiality
  • Stress right of respondent to terminate interview at any time
  • Request permission to use tape recorder

Knowledge of genetic disorders

  1. When did you first hear about genetic disorders?
  2. School
  3. Family
  4. Friends
  5. Media
  6. Other
  7. Reaction?
  1. Have you heard anything (what?) in the media about genetic disorders or genetic testing?
  2. TV
  3. Newspapers
  4. Radio
  5. Internet
  6. Other

Understanding of genetic inheritance and genetic risk

  1. What do you understand about genetic inheritance?
  2. prevalence of genetic disorders?
  3. recessive inheritance?
  4. carrier status/ implications for family members/reactions?
  1. What are your views on testing for carrier status?

Positive? Why?

Negative? Why?

Support structures in dealing with knowledge about genetic risk

  1. Have you ever discussed genetic risk with anyone?
  • Health professionals
  • Family / Immediate/ extended/ friends/community
  • Nature/ frequency/ quality of interaction
  • Information/support received

Sharing information

  1. Do you feel it’s better to share, or not to share information about genetic risk with others?
  • Immediate family
  • Extended family
  • Friends
  • Others
  • Why?

If better to share

  1. What would help to share information about genetic risk?
  2. Within family/health professionals
  3. People
  4. Communication tools
  5. Public messages
  6. Other
  1. What makes it difficult to communicate information about genetic risk?
  • Lack of information
  • Difficulties in explaining inheritance
  • Other people’s preconceived ideas
  • Other

Views and experience of marrying within the family

  1. How do you view marrying within the family?
  2. Negative? Why?
  3. Positive? Why?
  4. Experiences

9.Have you ever heard anything about marrying in the family being the cause of health problems?

If so,

  • What have you heard?
  • Where have you heard this from?

- Health professionals

- Media

- Pakistani community

- Wider community

- Extended family

- Immediate family

- Other

  1. What has your reaction been to these statements?
  2. Immediate family
  3. Extended family
  4. Friends
  1. Have you, your family or friends faced any particular dilemmas because of these statements?
  2. Considering marriage partners within the family
  3. Other

Information and support

If yes to question 11:

12. What would help you to deal with these dilemmas?

  • Information/format: TV, Radio, Newspapers/other media/health professionals/community organisations
  • Support/ from whom: family members/within Pakistani community/health professionals

13. Which languages do you feel most comfortable receiving information in?

  • Other family members

Is it possible to speak to any other member of your family about their views and experience of genetic testing and marriage between relatives?

Thank you for participating.

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