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ANNEX Key Informant Interview Questionnaire

Introduction: A group of post graduate students from Addis Ababa University (AAU), the School of Social Work are carrying out study on the theme of The Psychological and Spiritual Effects of Parkinsons Disease (PD). The primary purpose of this study is to fulfill the academic requirements for the course of Community Health and Social Problems, but it has also the aim to understand the real cause, economic, social, psychological and spiritual effects of the PD in the Ethiopian context, and to make relevant recommendations based on gathered facts for those interested parties who needs to make intervention in this major societal problem

One to one interview type of questionnaire has been designed to gather the opinions of peoples who are living with PD. Confidentiality and consent: Thank you very much for participating in todays interview. The data recorded through this opinion survey will be kept confidential and the anonymity of respondents will be respected throughout the data processing and analysis process. Your answers are completely confidential. You do not have to answer any questions that you do not want to answer, and you may end this interview at any time you want to. However, your honest answers to these questions will help us better understand what peoples with PD think, say and do with its multifaceted effects of the disease.

Again, thank you for making time in your schedule today. We really appreciate you for giving us your time and opinion.

Section One: Personal Data


1. Name please [ Optional] -------------------------------------------2. Gender? F M

Key Informant Interview Questionnaire (KIIQ)

3. Age range? A) Below 18 B) 18 - 30 C) 31 40 4. Marital status? a) Single b) Married c) Separated d) Divorced D) 41- 50 E) 51 & Above

5. What is the highest level of education that you have completed or the highest degree that you have received?
a) Primary school b) Secondary school/high school c) Vocational or technical school d) Some college, no degree e) Bachelors Degree f)

Advanced Degree (Masters, PhD)

6. In which sub city /Area of city are you living? _____________________

Section Two: Effects on Health and Economy


7. How long have you suffered from the PD? _______________________________________________________________________ ______________________ 8. Who told you for the first time that you have PD? a) Doctor b) Friend c) Family member d) Other, please specify _____________________
Key Informant Interview Questionnaire (KIIQ) 2

9. What was your feeling and reaction when you knew for the first time that you have PD? _______________________________________________________________________ ______________________

10. What are the effects of the PD on your daily life? (multiple answers are possible for this question)

a) Partial/total inability to move from place to place b) Partial/total inability to communication orally c) Partial/total hearing impairment d) Partial/total inability to read and write e) Partial/total inability to feed & dress by myself f) Other/s [Please specify] _____________________ 11. Are you employed? A) Yes B) No 12. If Yes, please state the sector in which you are working? A) Government B) Private Sector C) NGOs/Association D) Self-employed E) Other [Please specify] _____________________ 13. What type of job are you working? A) Office work B) Industry/factory C) Service giving/that have customers D) Other [Please specify] _____________________

Key Informant Interview Questionnaire (KIIQ)

14. Does the PD affect your daily/monthly income? And if your answer is yes how? Do you think that your current income level is less than what you had been earning prior to the PDs appearance? _______________________________________________________________________ ______________________ 15. How much do you spend monthly on average in relation to the PD for medical related issues (to see doctor, medication, and therapy, etc)? _____________________

Section Three: Effects on Social, Spiritual and Psychological Aspects


16. Who are on your side as caregivers in dealing with your PD associated problems? a) Spouse (if you are married) b) Children c) Friends d) Relatives e) Others (please specify) _____________________ 17. From which organizations or institutions are you getting the necessary care and support? A) Religious institutions B) Health facilities C) NGOs D) Iddirs E) Self-help groups F) Others (please specify) _____________________ 18. What type of care (s) and support are you receiving (have you received) from those organizations or institutions? A) Financial support B) Health care (medical treatment/provision of medicines, etc) C) Psychological support D) Emotional/moral support E) Other services(please specify) _____________________

Key Informant Interview Questionnaire (KIIQ)

19. How do you rate the services that you are receiving from these institutions and individuals? A) Excellent B) Very good, C) Good D) Poor 20. Does the PD affect your day-to-day social relationships? If Yes how? a) Relation with Spouse (if you are married) b) Relation with Family member c) Relations with the neighborhood community d) Relation with the Colleagues or co-workers 21. Has your social relationship changed due to the PD? (it could be positively and negatively) , please elaborate? _______________________________________________________________________

22. Have you ever faced any psychological influence as a result of PD? If yes what are these influences?

23. Which faith/religion are you following? a) Orthodox b) Muslim c) Protestant d) Catholic e) Pagan/Atheist f) Other [Please specify] _____________________

24. Do you personally believe that the PD has some supernatural origin (Do you attribute it to a curse or other religious sin)
Key Informant Interview Questionnaire (KIIQ) 5

a) Yes b) No 25. If your answer is Yes, have you ever resorted to the following religious/cultural interventions? a) Going to holy water/Tsebel/ b) Praying in church/mosque with the help of priest/pastor/sheik c) Traditional healer /Awaki /Tenkuway/ d) Other [Please specify] _____________________

Section Four: Remedial Opinions


26. What should be done to prevent this disease from the beginning from your own life experience? _______________________________________________________________________ ______________________ 27. What do you think should be done to alleviate the social, economic, spiritual and psychological effects of the PD at each of the following listed levels a) At individual level (from the patient himself/herself) _____________________________________________________________________ b) At Family level _____________________________________________________________________ c) At community level (school, churches, NGOs/CSO, etc) _____________________________________________________________________ d) Government level ____________________________________________________________________ 28. Do you have any general concluding comment in relation to the PD? _______________________________________________________________________ ______________________

Key Informant Interview Questionnaire (KIIQ)

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