Family Caregivers
**Modified City of Hope Family Questionnaire
February 2001
Please answer the following questions based on your life at this time. Circle the number from 0 - 10 that best describes your experiences:
Physical Area
To what extent are the following a problem for you:
1. Fatigue
No problem 0 1 2 3 4 5 6 7 8 9 10 Severe problem
2. Sleep changes
No problem 0 1 2 3 4 5 6 7 8 9 10 Severe problem
3. Appetite changes
No problem 0 1 2 3 4 5 6 7 8 9 10 Severe problem
4. Aches or pain
No problem 0 1 2 3 4 5 6 7 8 9 10 Severe problem
5. Rate your overall physical health
Extremely poor 0 1 2 3 4 5 6 7 8 9 10 Excellent
Emotional / Relationship Area
6. How satisfying is your life?
Not at all 0 1 2 3 4 5 6 7 8 9 10 Completely
7. How much anxiety do you have?
None at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
8. How free are you to express feeling of sadness, grief, and anger?
Not at all 0 1 2 3 4 5 6 7 8 9 10 Completely
9. Do you have enough opportunity to talk about your loved one's illness, experiences, and possible death?
Not at all 0 1 2 3 4 5 6 7 8 9 10 Completely
10. Do you have enough opportunity to talk with others about how your loved one's illness has affected you and how you are doing?
Not at all 0 1 2 3 4 5 6 7 8 9 10 Completely
11. How much do you feel like your loved one's care is manageable for you and your family?
Not at all 0 1 2 3 4 5 6 7 8 9 10 Completely
12. How much do you worry about family and friends not being there for you?
Not at all 0 1 2 3 4 5 6 7 8 9 10 Completely
13. Have family / friends given specific support without you asking?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
14. Do you have opportunities to talk openly about your experiences with family and friends?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
15. Is the amount of support you receive from others sufficient to meet your needs?
Not at all 0 1 2 3 4 5 6 7 8 9 10 Completely
16. How much isolation do you feel is caused by your family member's illness or treatment?
None 0 1 2 3 4 5 6 7 8 9 10 A great deal
17. Do you know your loved one's care and treatment wishes and goals?
Not at all 0 1 2 3 4 5 6 7 8 9 10 Completely
18. If you are still working, has your work place been supportive? (leave blank if not still working)
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
19. To what degree has your family member's illness and treatment interfered with your employment?
No problem 0 1 2 3 4 5 6 7 8 9 10 Severe problem
20. To what degree has your family member's illness and treatment interfered with your activities at home?
No problem 0 1 2 3 4 5 6 7 8 9 10 Severe problem
21. How much financial burden resulted from your family member's illness or treatment?
None 0 1 2 3 4 5 6 7 8 9 10 Extreme
22. How much has there been a problem receiving needed support to meet your financial needs?
No problem 0 1 2 3 4 5 6 7 8 9 10 Severe problem
Spiritual Area
23. How important to you is your participation in spiritual or religious experiences (e.g. meditation, spiritual traditions or rituals, praying, or going to a place of worship)?
Not at all 0 1 2 3 4 5 6 7 8 9 10 Very Important
24. Is the amount of support you receive from religious activities such as going to church or temple sufficient to meet your needs?
Not at all 0 1 2 3 4 5 6 7 8 9 10 Completely
25. To what extent has your loved one's illness made positive changes in your life?
None at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
26. Do you sense a purpose / mission for your life or a reason for being alive?
None at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
27. How hopeful do you feel?
Not at all hopeful 0 1 2 3 4 5 6 7 8 9 10 Very hopeful
28. How much opportunity have you had to reflect with your family member on his/her life?
None at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
29. Do you view time as precious and value each minute of life?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
30. Have you experienced healing in spiritual, emotional, relational areas of your life?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
Please share other comments about your experience
Place of Care Environment (Health Care Experience)
1. Your loved one's experience receiving effective and timely pain management
No problem 0 1 2 3 4 5 6 7 8 9 10 Severe problem
2. Your loved one's experience receiving effective and timely symptom relief, e.g. difficulty breathing, nausea, constipation.
No problem 0 1 2 3 4 5 6 7 8 9 10 Severe problem
3. Adequate help for meeting your loved one's physical needs at home
No problem 0 1 2 3 4 5 6 7 8 9 10 Severe problem
4. Were you given enough information about your loved one's care and treatment choices to prepare you for his/her care and treatments?
Not at all 0 1 2 3 4 5 6 7 8 9 10 Completely
5. How difficult was it to find out information about your loved one's illness, care, and treatment choices?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
6. If there was a conflict over your loved one's care, did you feel supported in having your care wishes honored?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
7. Did you feel that you had appropriate control over your loved one's care choices and health care experiences?
Not at all 0 1 2 3 4 5 6 7 8 9 10 Completely
8. Did you feel free to refuse care or treatments for your loved one?
Not at all 0 1 2 3 4 5 6 7 8 9 10 Completely
9. Did you and your family feel welcomed 24 hours a day and with each appointment?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
10. Was your privacy and confidentiality respected?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
11. Were you given information about support groups for yourself and your loved one or put in touch with others who had similar experiences?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
12. Do you have access to and opportunity to talk with professional counselors?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
13. Were you given the opportunity to have chaplains or others to pray with and for you and your loved one or to say no to their praying with or for you?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
14. Did the health care team ask about your loved one's Living Will or advance care planning?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
15. Please rate your overall experience with the quality of your health services
Very inconsistent 0 1 2 3 4 5 6 7 8 9 10 Consistently high
16. Have those caring for your loved one had a good understanding of the illness, treatment, and care wishes?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
17. Have people consistently followed through on you and your loved one's care wishes?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
18. Did you get enough help obtaining and completing applications and financial forms, e.g. insurance, social security, disability?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
19. Did you get enough help finding needed resources and support, e.g. transportation or homemaker assistance?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
DOCTORS, NURSES / OTHER HEALTH CARE PROVIDERS COMMUNICATION
20. Have you felt caring, respect, and genuine presence from your loved one's doctors?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
21. Have you felt caring, respect, and genuine presence from your nurses and others?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
22. Was your loved one's doctor's communication with you easy to understand and consistent?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
23. Was your loved one's nurses' communication with you easy to understand and consistent?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
24. Did you feel supported by your loved one's doctors if you looked for second opinions and other care choices?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
25. If you had questions about "complementary therapies", did your loved one's doctors' answer your questions to your satisfaction?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
26. How much do you worry about physicians and other professionals not being there for you?
Not at all 0 1 2 3 4 5 6 7 8 9 10 Completely
27. To what extent has communication with healthcare personnel assisted you to maintain hope?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
28. Have your doctor(s) provided you the opportunity to discuss your loved one's possible death?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
29. Have your nurses / others provided you the opportunity to discuss your loved one's possible death?
Not at all 0 1 2 3 4 5 6 7 8 9 10 A great deal
Please share other comments about your experience
**Modified by Supportive Care of the Dying: A Coalition for Compassionate Care
Information About You
Please complete the following questions about you. This information will be kept strictly confidential.
Location Where Questionnaire Completed:
___Home ___Hospital ___Long Term Care ___Dr's Office
___Other (please specify) ________________________
Age __________ Gender: ____Male ___Female
Diagnosis or Illness that seems to be life - threatening:
_____________________________________________________
Race/Ethnicity Religion
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___White/Caucasian |
___Jewish |
___Muslim |
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___Black/African American |
___Catholic |
___Buddhist |
|
___Asian or Pacific Islander |
___Jehovah's Witness |
___Bahia |
|
___Hispanic |
___Christian Scientist |
___No religion |
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___Native American |
___Seventh Day Adventist |
___Other (specify): |
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___Other |
___Protestant |
|
| |
___Native American |
___________________ |
Insurance:
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___Private/Commercial insurance |
___No insurance / self-payment |
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___Medicare |
___Other insurance |
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___Medicaid |
|
Health Maintenance Organization (HMO) ___yes ___no
Yearly household income before taxes:
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___less than $25,000 |
___$75,001 - $100,000 |
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___$25,001 - $50,000 |
___more than $100,000 |
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___$50,001 - $75,000 |
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Current Living Arrangements:
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___Living alone at home |
___Assisted Living |
|
___Home with family / friends |
___Nursing Home |
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___Living with family / friends in their home |
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Health Services you are receiving:
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___Home Health |
___Church based ministries, e.g. Stephen Ministries |
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___Hospice |
___Visiting Nurse |
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___Parish Nurse |
___Other (specify): _________________________ |
Please call me about my care or this questionnaire ____yes ___no
Date Questionnaires completed _______________ I.D. number_____________
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