Siblings who have been informed and asked to become stem cell donors —a questionnaire survey

(Translation from Swedish)

The following questions, questions 1–11, seek background information about you.Answer each question by filling in or marking with a cross the responses that best apply to you.

1. I was born in the year: ______

2. I am:Man 

Woman

3. I am: Employed

A student

Unemployed

Retired

Other specify: ______

4. I am: Married/cohabiting

Living alone

Separated

Divorced

Other specify: ______

5. I have:Children living at home age(s): ______

Children who have left home age(s): ______

No children

6. My sick sibling is: My brother

My sister

7. I gave a blood sample for HLA typing

I did not give a blood sample for HLAtyping

8.I matched as a donor

I did not match as a donor

Not applicable

9. How did you receive the information that you matched or did not match as a donor?

Letter

Telephone call from doctor

Telephone call from nurse

Other wayspecify: ______

Not applicable

10.Would you have preferred to receive the information in another way?

Yes

No

Not applicable

If yes, in what way and from whom? ______

11. I have donated stem cells to my sibling

I have not donated stem cells to my sibling

The questions below, questions 12–21, are about your perceptions of how the information and care provisionworked before your decision on whether to give a blood sample for HLA typing.

Answer each question by putting a cross in the square that best applies to you.

To a very high degree / To a fairly high degree / To a fairly low degree / Not at all / Don’t know
12. Did you feel that the written information about stem cell donation was sufficient? /  /  /  /  / 
13. Did you feel that something was missing from the written information about stem cell donation? /  /  /  /  / 
14. Did you feel that the written information about stem cell donation was easy to understand? /  /  /  /  / 
15. Did you feel that you had the possibility of receiving sufficient additional oral information by telephonebefore your decision? /  /  /  /  / 
16. Did you feel thatthat your decision was influencedby health professionals? /  /  /  /  / 
If you did notfeel that you were influencedby health professionals, go straight to question17.
Mark you answer to the following question with crosses for all alternatives that apply:
16a. Who or which category of healthprofessionals influenced your decision? / Doctor
Registered nurse
Nursing assistant
Other / 


 Specify: ______
To a very high degree / To a fairly high degree / To a fairly low degree / Not at all / Don’t know
16b. Did you feel that the influence of health professionals was a supportthat facilitated your decision? /  /  /  /  / 
To a very high degree / To a fairly high degree / To a fairly low degree / Not at all / Don’t know
16c. Did you feel that the influence of health professionals made your decision more difficult? /  /  /  /  / 
17. Did you feel that your decision was influencedby someone in your immediate circle? /  /  /  /  / 
If you did notfeel that you were influencedby someone in your immediate circle, go straight to question 18
Mark your answer to the following question with crosses for all alternatives that apply:
17a. Who in your immediate circle influenced your decision? / Husband/wife/partner
Child
Parent
Sibling (=the patient) / 



Other sibling
Brother-/sister-in-law
Other / 

 Specify: ______
To a very high degree / To a fairly high degree / To a fairly low degree / Not at all / Don’t know
17b. Did you feel that the influence of those in your immediate circle was a support that facilitated your decision? /  /  /  /  / 
17c. Did you feel that the influence of those in your immediate circle made your decision more difficult? /  /  /  /  / 
18. Did you feel that the health professionals respected your privacy? /  /  /  /  / 
19. Did you feel confidence in the health professionals? /  /  /  /  / 
20. Did you feel that the care provided by the health professionals was positive? /  /  /  /  / 
21. Did you feel that there were shortcomings in the care provision by thehealth professionals? /  /  /  /  / 

The questions below, questions 22–29, relate to how important different aspects of information and care provision are for you.

Answer each question by putting a cross in the square that best applies to you.

To a very high degree / To a fairly high degree / To a fairly low degree / Not at all / Don’t know
22. How important is comprehensive written information about stem cell donation? /  /  /  /  / 
23. How important is easy-to-understand written information about stem cell donation? /  /  /  /  / 
24. How important is the possibility of getting additional oral information by telephone? /  /  /  /  / 
25. How important is support from health professionals before your decision? /  /  /  /  / 
26. How important is support from those in your immediate circle, e.g. from your family, before your decision? /  /  /  /  / 
27. How important is respect for privacy from health professionals? /  /  /  /  / 
28. How important is it that you have confidence in health professionals? /  /  /  /  / 
29. How important is positive care provisionby health professionals? /  /  /  /  / 

30. Other observations:

______

Thanks for your help in responding to the survey! Your observations are valuable.