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PEDIATRIC PALLIATIVE CARE PROJECT

FAMILY SATISFACTION ASSESSMENT

Date: _____/_____/______

Patients Project ID# _________

Thank you for taking part in our project. This assessment will be in two parts: Part I asks about general health care issues; Part II asks about specific aspects of the project. Part II will not be assessed until after you have been in the project for three months. As you answer the survey questions, please think of your childs illness before, during and after your involvement in the Pediatric Palliative Care Project. Your answers will remain strictly confidential; your name will be separated from your answers. Only groups of answers and trends will be compared and reported. Note: in this assessment, the term health care team includes all medical staff who are currently working with your child (i.e., primary doctor, specialist doctor, nurse practitioner, hospice worker, home health worker, etc.).

PEDIATRIC PALLIATIVE CARE PROJECT

FAMILY SATISFACTION ASSESSMENT


PART ONE

A. OVERALL SATISFACTION Please circle the number that best describes your overall level of satisfaction. HOW SATISFIED ARE YOU WITH 1. The overall care your child has been receiving? 2. The way your child has been treated by providers at the hospital? 3. The way your child has been treated by providers at home? 4. The relief of pain and symptoms your child has been receiving? 5. The emotional support your child has been receiving? 6. The emotional support your family has been receiving? Very Dissatisfied
1 1 1 1 1 1 2 2 2 2 2 2

Neutral
3 3 3 3 3 3 4 4 4 4 4 4

Very Satisfied
5 5 5 5 5 5

B. QUALITY OF INFORMATION HOW SATISFIED ARE YOU WITH


7. The quality of information that you have received

Very Dissatisfied
1 1 2 2

Neutral
3 3 4 4

Very Satisfied
5 5

about your childs condition? 8. The quality of information that you have received about what might happen with your childs health in the future? 9. The quality of information that you have received about the different ways your child could be treated? 10. The degree to which you have understood all this information? 11. The quality of information that your child received about his/her condition? 12. The quality of information that your child received about what might happen to him/her health-wise in the future? 13. The quality of information that your child received about the different ways he/she could be treated? 14. The degree to which your child has understood this information?

1 1 1 1 1 1

2 2 2 2 2 2

3 3 3 3 3 3

4 4 4 4 4 4

5 5 5 5 5 5

PEDIATRIC PALLIATIVE CARE PROJECT

FAMILY SATISFACTION ASSESSMENT

C. QUALITY OF COMMUNICATION HOW SATISFIED ARE YOU WITH THE FOLLOWING:


15. How well the providers told you all this

Very Dissatisfied
1 1 1 1 2 2 2 2

Neutral
3 3 3 3 4 4 4 4

Very Satisfied
5 5 5 5

information? 16. How well the providers listened to and answered your questions? 17. How well the providers told your child all this information? 18. How well the providers listened to and answered your childs questions?

D. QUALITY OF WORKING TOGETHER HOW SATISFIED ARE YOU WITH THE FOLLOWING:
19. How well the providers have been sensitive to

Very Dissatisfied
1 1 1 1 2 2 2 2

Neutral
3 3 3 3 4 4 4 4

Very Satisfied
5 5 5 5

your needs? 20. How well the providers have been sensitive to your childs needs? 21. How well the providers worked together with you and your child to make decisions about what medical care to provide?
22. How well the providers stuck to those decisions?

E. QUALITY OF CARE HOW SATISFIED ARE YOU WITH THE FOLLOWING:


23. How well the providers have kept your child pain-

Very Dissatisfied
1 1 1 1 1 1 2 2 2 2 2 2

Neutral
3 3 3 3 3 3 4 4 4 4 4 4

Very Satisfied
5 5 5 5 5 5

free. 24. How well the providers have kept your childs other symptoms comfortable. 25. How quickly the providers have responded to your childs needs. 26. How well the providers have prepared you for going home from the hospital. 27. How well the providers have prepared your child for going home from the hospital. 28. How well the providers have prepared your child to go back to school.

PEDIATRIC PALLIATIVE CARE PROJECT

FAMILY SATISFACTION ASSESSMENT

F. QUALITY OF HEALTH PLAN HOW SATISFIED ARE YOU WITH THE FOLLOWING:
29. The ease of getting care you believed necessary. 30. The ease of getting your childs health plan to pay

Very Dissatisfied
1 1 1 2 2 2

Neutral
3 3 3 4 4 4

Very Satisfied
5 5 5

their share of the costs. 31. The clarity of the explanation about your childs insurance benefits.

Again, thank you for being part of this project and for your time in completing this survey. If you have any questions, please contact [Name and Phone # of your organizations contact.]

PEDIATRIC PALLIATIVE CARE PROJECT

FAMILY SATISFACTION ASSESSMENT


PART TWO
This section looks at parts of the Pediatric Palliative Care Project and how it has impacted you and your child within the last three months. Please tell me the number that best describes your feelings. A. CONFIDENCE HOW CONFIDENT ARE YOU WITH
1. Managing your childs pain? 2. Managing your childs symptoms? 3. Selecting among your childs care options?

Not at all Confident


1 1 1 2 2 2

Somewhat Confident
3 3 3 4 4 4

Very Confident
5 5 5

B. ACCEPTABILITY HOW ACCEPTABLE IS/ARE


4. The amount of pain and symptom relief for your

Not at all Acceptable


1 1 1 1 2 2 2 2

Somewhat Acceptable
3 3 3 3 4 4 4 4

Very Acceptable
5 5 5 5

child? 5. The speed at which your childs pain and symptoms were relieved?
6. The choices of care available to your child? 7. The group decision-making process with the

providers?

C. USEFULNESS OF TOOLS AND HANDOUTS HOW USEFUL HAS


7. The Family Guide been in helping your child? 8. The Family Guide been in building your

Not at all Useful


1 1 1 1 1 1 2 2 2 2 2 2

Somewhat Useful
3 3 3 3 3 3 4 4 4 4 4 4

Very Useful
5 5

confidence in making choices about your childs care options? 9. The Pain & Symptom Algorithms been in helping your child? 10. The Pain & Symptom Algorithms been in building your confidence in making choices about your childs care options? 11. The Decision-making Tool been in helping your child? 12. The Decision-making Tool been in building your confidence in making choices about your childs care options? 13. Other parts of this project been in building your confidence in making choices about your childs care options? Other part: ____________________________

5 5 5 5

Please note: if you indicated a 1 or 2 to any of the above questions, please explain on the following page what would increase that rating.

PEDIATRIC PALLIATIVE CARE PROJECT

FAMILY SATISFACTION ASSESSMENT


D. COMMENTS Please explain any ratings given on the previous page that were less than 3 and tell us what, if anything, would cause you to increase that rating.

Please tell us anything about your experience in this project you feel we should know.

Please suggest any ways we can improve this project.

Again, thank you for being part of this project and for your time in completing this assessment.