#2 - ND Program - Survey for Parents

Thank you for your willingness to help with this project. As a mother of two with cystic fibrosis (ages 14 and 12), my own "newly diagnosed" experience was very difficult. Now, as a professional family life educator and a master's student, I hope to help other families through this time with tools and resources I didn't have. But I need your help! My experience is simply one person's.

Rationale For This Project

Research shows that:
• Families have a powerful influence on health, equal to traditional medical risk factors.
• Emotional support is the most important and influential type of support.
• Negative, critical, or hostile family relationships are the most damaging.
• Family psychoeducation interventions help in the prevention or treatment of physical disorders.
(Campbell, 2003, The effectiveness of family interventions for physical disorders)

A study by Bartholomew et.al (1997) found, in a randomized controlled trial, that children and adolescents with CF who received psychoeducation reported improved overall health. According to Campbell (2003), this study suggests: “That family psychoeducation may actually be able to extend the lives of those who suffer from CF.”

WOW! I don't know about you but this excites me. Education is doable! :-) Family psychoeducation sounds kind of scary but basically, it simply addresses family relationships, how members are affected by illness, and teaches problem-solving, communication, and coping skills.

So, the goal of this program is to teach parents, caregivers and other family members the skills and tools to effectively cope with the many challenges of facing a new CF diagnosis.

Your answers to the following questions as well as your comments and ideas will help me to do a good job in planning and creating a program that will truly meet the needs of parents. Thank you.

PS: As you think about all of the survey questions, please frame your answers from an educational perspective (keeping in mind that there are many ways of educating including traditional instruction methods, facilitation, role plays, group discussion, etc.).

Question Title

* 1. Please rate the following areas in how important you think it is for helping you COPE EFFECTIVELY throughout your child's lifespan. "Coping" refers to the thoughts and actions we use to deal with stress and problems.

	Don't Know	Not important	Slightly important	Mostly important	Very Important
Advocacy Skills- how to speak up; how to solve problems	Advocacy Skills- how to speak up; how to solve problems Don't Know	Advocacy Skills- how to speak up; how to solve problems Not important	Advocacy Skills- how to speak up; how to solve problems Slightly important	Advocacy Skills- how to speak up; how to solve problems Mostly important	Advocacy Skills- how to speak up; how to solve problems Very Important
Child development- understanding ages and stages of child development	Child development- understanding ages and stages of child development Don't Know	Child development- understanding ages and stages of child development Not important	Child development- understanding ages and stages of child development Slightly important	Child development- understanding ages and stages of child development Mostly important	Child development- understanding ages and stages of child development Very Important
Communication skills (with medical team, family members, schools, etc.)	Communication skills (with medical team, family members, schools, etc.) Don't Know	Communication skills (with medical team, family members, schools, etc.) Not important	Communication skills (with medical team, family members, schools, etc.) Slightly important	Communication skills (with medical team, family members, schools, etc.) Mostly important	Communication skills (with medical team, family members, schools, etc.) Very Important
Couple relationship coping and communication skills	Couple relationship coping and communication skills Don't Know	Couple relationship coping and communication skills Not important	Couple relationship coping and communication skills Slightly important	Couple relationship coping and communication skills Mostly important	Couple relationship coping and communication skills Very Important
Developmentally-based transition planning starting at diagnosis	Developmentally-based transition planning starting at diagnosis Don't Know	Developmentally-based transition planning starting at diagnosis Not important	Developmentally-based transition planning starting at diagnosis Slightly important	Developmentally-based transition planning starting at diagnosis Mostly important	Developmentally-based transition planning starting at diagnosis Very Important
Disease knowledge- The nuts and bolts of CF pathology	Disease knowledge- The nuts and bolts of CF pathology Don't Know	Disease knowledge- The nuts and bolts of CF pathology Not important	Disease knowledge- The nuts and bolts of CF pathology Slightly important	Disease knowledge- The nuts and bolts of CF pathology Mostly important	Disease knowledge- The nuts and bolts of CF pathology Very Important
Emotional Intelligence: Parents coping with own emotions, child's emotions, etc.	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Don't Know	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Not important	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Slightly important	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Mostly important	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Very Important
Family resiliency (building protective factors and mitigating risk factors)	Family resiliency (building protective factors and mitigating risk factors) Don't Know	Family resiliency (building protective factors and mitigating risk factors) Not important	Family resiliency (building protective factors and mitigating risk factors) Slightly important	Family resiliency (building protective factors and mitigating risk factors) Mostly important	Family resiliency (building protective factors and mitigating risk factors) Very Important
Family life cycle- the stages of family life and how CF impacts normal development	Family life cycle- the stages of family life and how CF impacts normal development Don't Know	Family life cycle- the stages of family life and how CF impacts normal development Not important	Family life cycle- the stages of family life and how CF impacts normal development Slightly important	Family life cycle- the stages of family life and how CF impacts normal development Mostly important	Family life cycle- the stages of family life and how CF impacts normal development Very Important
Medical care knowledge- Proper care, technique, medications, etc.	Medical care knowledge- Proper care, technique, medications, etc. Don't Know	Medical care knowledge- Proper care, technique, medications, etc. Not important	Medical care knowledge- Proper care, technique, medications, etc. Slightly important	Medical care knowledge- Proper care, technique, medications, etc. Mostly important	Medical care knowledge- Proper care, technique, medications, etc. Very Important
Organizational skills including managing medications, time management, and record-keeping	Organizational skills including managing medications, time management, and record-keeping Don't Know	Organizational skills including managing medications, time management, and record-keeping Not important	Organizational skills including managing medications, time management, and record-keeping Slightly important	Organizational skills including managing medications, time management, and record-keeping Mostly important	Organizational skills including managing medications, time management, and record-keeping Very Important
Parenting Skills including parenting styles and child discipline	Parenting Skills including parenting styles and child discipline Don't Know	Parenting Skills including parenting styles and child discipline Not important	Parenting Skills including parenting styles and child discipline Slightly important	Parenting Skills including parenting styles and child discipline Mostly important	Parenting Skills including parenting styles and child discipline Very Important
Stress management skills	Stress management skills Don't Know	Stress management skills Not important	Stress management skills Slightly important	Stress management skills Mostly important	Stress management skills Very Important
Support- getting and maintaining a support network	Support- getting and maintaining a support network Don't Know	Support- getting and maintaining a support network Not important	Support- getting and maintaining a support network Slightly important	Support- getting and maintaining a support network Mostly important	Support- getting and maintaining a support network Very Important
Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Don't Know	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Not important	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Slightly important	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Mostly important	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Very Important
Other:	Other: Don't Know	Other: Not important	Other: Slightly important	Other: Mostly important	Other: Very Important

Other (please specify)

Question Title

* 2. What do you think is MOST important for EFFECTIVE COPING? Please rank the categories with 1 being the most important.

Advocacy Skills- how to speak up; how to solve problems

Child development- understanding ages and stages of child development

Communication skills (with medical team, family members, schools, etc.)

Couple relationship coping and communication skills

Developmentally-based transition planning starting at diagnosis

Disease knowledge- The nuts and bolts of CF pathology

Emotional Intelligence: Parents coping with own emotions, child's emotions, etc.

Family resiliency (building protective factors and mitigating risk factors)

Family life cycle- Understanding the stages of family life and how CF impacts normal development

Medical care knowledge- Proper care, technique, medications, etc.

Organizational skills including managing medications, time management, and record-keeping

Parenting Skills including parenting styles and child discipline

Stress management skills

Support- getting and maintaining a support network

Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy

Other (from previous question)

Question Title

* 3. Family life education is about looking forward and preventing foreseeable problems. Please rate the following areas in how important you think it is to helping you to maintain GOOD MEDICAL ADHERENCE throughout your child's lifespan:

	Don't Know	Not important	Slightly important	Mostly important	Very important
Advocacy Skills- how to speak up; how to solve problems	Advocacy Skills- how to speak up; how to solve problems Don't Know	Advocacy Skills- how to speak up; how to solve problems Not important	Advocacy Skills- how to speak up; how to solve problems Slightly important	Advocacy Skills- how to speak up; how to solve problems Mostly important	Advocacy Skills- how to speak up; how to solve problems Very important
Child development- understanding ages and stages of child development	Child development- understanding ages and stages of child development Don't Know	Child development- understanding ages and stages of child development Not important	Child development- understanding ages and stages of child development Slightly important	Child development- understanding ages and stages of child development Mostly important	Child development- understanding ages and stages of child development Very important
Communication skills (with medical team, family members, schools, etc.)	Communication skills (with medical team, family members, schools, etc.) Don't Know	Communication skills (with medical team, family members, schools, etc.) Not important	Communication skills (with medical team, family members, schools, etc.) Slightly important	Communication skills (with medical team, family members, schools, etc.) Mostly important	Communication skills (with medical team, family members, schools, etc.) Very important
Couple relationship coping and communication skills	Couple relationship coping and communication skills Don't Know	Couple relationship coping and communication skills Not important	Couple relationship coping and communication skills Slightly important	Couple relationship coping and communication skills Mostly important	Couple relationship coping and communication skills Very important
Developmentally-based transition planning starting at diagnosis	Developmentally-based transition planning starting at diagnosis Don't Know	Developmentally-based transition planning starting at diagnosis Not important	Developmentally-based transition planning starting at diagnosis Slightly important	Developmentally-based transition planning starting at diagnosis Mostly important	Developmentally-based transition planning starting at diagnosis Very important
Disease knowledge- The nuts and bolts of CF pathology	Disease knowledge- The nuts and bolts of CF pathology Don't Know	Disease knowledge- The nuts and bolts of CF pathology Not important	Disease knowledge- The nuts and bolts of CF pathology Slightly important	Disease knowledge- The nuts and bolts of CF pathology Mostly important	Disease knowledge- The nuts and bolts of CF pathology Very important
Emotional Intelligence: Parents coping with own emotions, child's emotions, etc.	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Don't Know	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Not important	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Slightly important	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Mostly important	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Very important
Family resiliency (building protective factors and mitigating risk factors)	Family resiliency (building protective factors and mitigating risk factors) Don't Know	Family resiliency (building protective factors and mitigating risk factors) Not important	Family resiliency (building protective factors and mitigating risk factors) Slightly important	Family resiliency (building protective factors and mitigating risk factors) Mostly important	Family resiliency (building protective factors and mitigating risk factors) Very important
Family life cycle- the stages of family life and how CF impacts normal development	Family life cycle- the stages of family life and how CF impacts normal development Don't Know	Family life cycle- the stages of family life and how CF impacts normal development Not important	Family life cycle- the stages of family life and how CF impacts normal development Slightly important	Family life cycle- the stages of family life and how CF impacts normal development Mostly important	Family life cycle- the stages of family life and how CF impacts normal development Very important
Medical care knowledge- Proper care, technique, medications, etc.	Medical care knowledge- Proper care, technique, medications, etc. Don't Know	Medical care knowledge- Proper care, technique, medications, etc. Not important	Medical care knowledge- Proper care, technique, medications, etc. Slightly important	Medical care knowledge- Proper care, technique, medications, etc. Mostly important	Medical care knowledge- Proper care, technique, medications, etc. Very important
Organizational skills including managing medications, time management, and record-keeping	Organizational skills including managing medications, time management, and record-keeping Don't Know	Organizational skills including managing medications, time management, and record-keeping Not important	Organizational skills including managing medications, time management, and record-keeping Slightly important	Organizational skills including managing medications, time management, and record-keeping Mostly important	Organizational skills including managing medications, time management, and record-keeping Very important
Parenting Skills including parenting styles and child discipline	Parenting Skills including parenting styles and child discipline Don't Know	Parenting Skills including parenting styles and child discipline Not important	Parenting Skills including parenting styles and child discipline Slightly important	Parenting Skills including parenting styles and child discipline Mostly important	Parenting Skills including parenting styles and child discipline Very important
Stress management skills	Stress management skills Don't Know	Stress management skills Not important	Stress management skills Slightly important	Stress management skills Mostly important	Stress management skills Very important
Support- getting and maintaining a support network	Support- getting and maintaining a support network Don't Know	Support- getting and maintaining a support network Not important	Support- getting and maintaining a support network Slightly important	Support- getting and maintaining a support network Mostly important	Support- getting and maintaining a support network Very important
Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Don't Know	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Not important	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Slightly important	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Mostly important	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Very important
Other:	Other: Don't Know	Other: Not important	Other: Slightly important	Other: Mostly important	Other: Very important

Other (please specify)

Question Title

* 4. What do you think is MOST important for helping you maintain GOOD MEDICAL ADHERENCE ? Please rank the categories with 1 being the most important.

Advocacy Skills- how to speak up; how to solve problems

Child development- understanding ages and stages of child development

Communication skills (with medical team, family members, schools, etc.)

Couple relationship coping and communication skills

Developmentally-based transition planning starting at diagnosis

Disease knowledge- The nuts and bolts of CF pathology

Emotional Intelligence: Parents coping with own emotions, child's emotions, etc.

Family resiliency (building protective factors and mitigating risk factors)

Family life cycle- understanding the stages of family life and how CF impacts normal development

Medical care knowledge- Proper care, technique, medications, etc.

Organizational skills including managing medications, time management, and record-keeping

Parenting Skills including parenting styles and child discipline

Stress management skills

Support- getting and maintaining a support network

Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy

Other (from previous question)

Question Title

* 5. Research shows that all of these categories are important for families dealing with illness. However, time is limited for coursework so it's critical to teach the most important topics first. Please rank how important you think each topic would be for a class for NEWLY DIAGNOSED families (within the first year of diagnosis) to help set them on a "good path".

	Don't Know	Not important in a ND class	Slightly important in a ND class	Mostly important in a ND class	Very important in a ND class
Advocacy Skills- how to speak up; how to solve problems	Advocacy Skills- how to speak up; how to solve problems Don't Know	Advocacy Skills- how to speak up; how to solve problems Not important in a ND class	Advocacy Skills- how to speak up; how to solve problems Slightly important in a ND class	Advocacy Skills- how to speak up; how to solve problems Mostly important in a ND class	Advocacy Skills- how to speak up; how to solve problems Very important in a ND class
Please explain "not important" responses.
Child development- understanding ages and stages of child development	Child development- understanding ages and stages of child development Don't Know	Child development- understanding ages and stages of child development Not important in a ND class	Child development- understanding ages and stages of child development Slightly important in a ND class	Child development- understanding ages and stages of child development Mostly important in a ND class	Child development- understanding ages and stages of child development Very important in a ND class
Please explain "not important" responses.
Communication skills (with medical team, family members, schools, etc.)	Communication skills (with medical team, family members, schools, etc.) Don't Know	Communication skills (with medical team, family members, schools, etc.) Not important in a ND class	Communication skills (with medical team, family members, schools, etc.) Slightly important in a ND class	Communication skills (with medical team, family members, schools, etc.) Mostly important in a ND class	Communication skills (with medical team, family members, schools, etc.) Very important in a ND class
Please explain "not important" responses.
Couple relationship coping and communication skills	Couple relationship coping and communication skills Don't Know	Couple relationship coping and communication skills Not important in a ND class	Couple relationship coping and communication skills Slightly important in a ND class	Couple relationship coping and communication skills Mostly important in a ND class	Couple relationship coping and communication skills Very important in a ND class
Please explain "not important" responses.
Developmentally-based transition planning starting at diagnosis	Developmentally-based transition planning starting at diagnosis Don't Know	Developmentally-based transition planning starting at diagnosis Not important in a ND class	Developmentally-based transition planning starting at diagnosis Slightly important in a ND class	Developmentally-based transition planning starting at diagnosis Mostly important in a ND class	Developmentally-based transition planning starting at diagnosis Very important in a ND class
Please explain "not important" responses.
Disease knowledge- The nuts and bolts of CF pathology	Disease knowledge- The nuts and bolts of CF pathology Don't Know	Disease knowledge- The nuts and bolts of CF pathology Not important in a ND class	Disease knowledge- The nuts and bolts of CF pathology Slightly important in a ND class	Disease knowledge- The nuts and bolts of CF pathology Mostly important in a ND class	Disease knowledge- The nuts and bolts of CF pathology Very important in a ND class
Please explain "not important" responses.
Emotional Intelligence: Parents coping with own emotions, child's emotions, etc.	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Don't Know	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Not important in a ND class	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Slightly important in a ND class	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Mostly important in a ND class	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Very important in a ND class
Please explain "not important" responses.
Family resiliency (building protective factors and mitigating risk factors)	Family resiliency (building protective factors and mitigating risk factors) Don't Know	Family resiliency (building protective factors and mitigating risk factors) Not important in a ND class	Family resiliency (building protective factors and mitigating risk factors) Slightly important in a ND class	Family resiliency (building protective factors and mitigating risk factors) Mostly important in a ND class	Family resiliency (building protective factors and mitigating risk factors) Very important in a ND class
Please explain "not important" responses.
Family life cycle- the stages of family life and how CF impacts normal development	Family life cycle- the stages of family life and how CF impacts normal development Don't Know	Family life cycle- the stages of family life and how CF impacts normal development Not important in a ND class	Family life cycle- the stages of family life and how CF impacts normal development Slightly important in a ND class	Family life cycle- the stages of family life and how CF impacts normal development Mostly important in a ND class	Family life cycle- the stages of family life and how CF impacts normal development Very important in a ND class
Please explain "not important" responses.
Medical care knowledge- Proper care, technique, medications, etc.	Medical care knowledge- Proper care, technique, medications, etc. Don't Know	Medical care knowledge- Proper care, technique, medications, etc. Not important in a ND class	Medical care knowledge- Proper care, technique, medications, etc. Slightly important in a ND class	Medical care knowledge- Proper care, technique, medications, etc. Mostly important in a ND class	Medical care knowledge- Proper care, technique, medications, etc. Very important in a ND class
Please explain "not important" responses.
Organizational skills including managing medications, time management, and record-keeping	Organizational skills including managing medications, time management, and record-keeping Don't Know	Organizational skills including managing medications, time management, and record-keeping Not important in a ND class	Organizational skills including managing medications, time management, and record-keeping Slightly important in a ND class	Organizational skills including managing medications, time management, and record-keeping Mostly important in a ND class	Organizational skills including managing medications, time management, and record-keeping Very important in a ND class
Please explain "not important" responses.
Parenting Skills including parenting styles and child discipline	Parenting Skills including parenting styles and child discipline Don't Know	Parenting Skills including parenting styles and child discipline Not important in a ND class	Parenting Skills including parenting styles and child discipline Slightly important in a ND class	Parenting Skills including parenting styles and child discipline Mostly important in a ND class	Parenting Skills including parenting styles and child discipline Very important in a ND class
Please explain "not important" responses.
Stress management skills	Stress management skills Don't Know	Stress management skills Not important in a ND class	Stress management skills Slightly important in a ND class	Stress management skills Mostly important in a ND class	Stress management skills Very important in a ND class
Please explain "not important" responses.
Support- getting and maintaining a support network	Support- getting and maintaining a support network Don't Know	Support- getting and maintaining a support network Not important in a ND class	Support- getting and maintaining a support network Slightly important in a ND class	Support- getting and maintaining a support network Mostly important in a ND class	Support- getting and maintaining a support network Very important in a ND class
Please explain "not important" responses.
Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Don't Know	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Not important in a ND class	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Slightly important in a ND class	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Mostly important in a ND class	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Very important in a ND class
Please explain "not important" responses.
Other:	Other: Don't Know	Other: Not important in a ND class	Other: Slightly important in a ND class	Other: Mostly important in a ND class	Other: Very important in a ND class
Please explain "not important" responses.

Question Title

* 6. Please rank how well your CF clinic does/did at educating you WITHIN THE FIRST YEAR OF DIAGNOSIS in the following areas. For rankings of "not addressed" or "slightly addressed", please briefly explain why.

	Don't Know	Not addressed	Slightly addressed	Mostly addressed	Very addressed
Advocacy Skills- how to speak up; how to solve problems	Advocacy Skills- how to speak up; how to solve problems Don't Know	Advocacy Skills- how to speak up; how to solve problems Not addressed	Advocacy Skills- how to speak up; how to solve problems Slightly addressed	Advocacy Skills- how to speak up; how to solve problems Mostly addressed	Advocacy Skills- how to speak up; how to solve problems Very addressed
Why a low ranking?
Child development- understanding ages and stages of child development	Child development- understanding ages and stages of child development Don't Know	Child development- understanding ages and stages of child development Not addressed	Child development- understanding ages and stages of child development Slightly addressed	Child development- understanding ages and stages of child development Mostly addressed	Child development- understanding ages and stages of child development Very addressed
Why a low ranking?
Communication skills (with medical team, family members, schools, etc.)	Communication skills (with medical team, family members, schools, etc.) Don't Know	Communication skills (with medical team, family members, schools, etc.) Not addressed	Communication skills (with medical team, family members, schools, etc.) Slightly addressed	Communication skills (with medical team, family members, schools, etc.) Mostly addressed	Communication skills (with medical team, family members, schools, etc.) Very addressed
Why a low ranking?
Couple relationship coping and communication skills	Couple relationship coping and communication skills Don't Know	Couple relationship coping and communication skills Not addressed	Couple relationship coping and communication skills Slightly addressed	Couple relationship coping and communication skills Mostly addressed	Couple relationship coping and communication skills Very addressed
Why a low ranking?
Developmentally-based transition planning starting at diagnosis	Developmentally-based transition planning starting at diagnosis Don't Know	Developmentally-based transition planning starting at diagnosis Not addressed	Developmentally-based transition planning starting at diagnosis Slightly addressed	Developmentally-based transition planning starting at diagnosis Mostly addressed	Developmentally-based transition planning starting at diagnosis Very addressed
Why a low ranking?
Disease knowledge- The nuts and bolts of CF pathology	Disease knowledge- The nuts and bolts of CF pathology Don't Know	Disease knowledge- The nuts and bolts of CF pathology Not addressed	Disease knowledge- The nuts and bolts of CF pathology Slightly addressed	Disease knowledge- The nuts and bolts of CF pathology Mostly addressed	Disease knowledge- The nuts and bolts of CF pathology Very addressed
Why a low ranking?
Emotional Intelligence: Parents coping with own emotions, child's emotions, etc.	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Don't Know	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Not addressed	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Slightly addressed	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Mostly addressed	Emotional Intelligence: Parents coping with own emotions, child's emotions, etc. Very addressed
Why a low ranking?
Family resiliency (building protective factors and mitigating risk factors)	Family resiliency (building protective factors and mitigating risk factors) Don't Know	Family resiliency (building protective factors and mitigating risk factors) Not addressed	Family resiliency (building protective factors and mitigating risk factors) Slightly addressed	Family resiliency (building protective factors and mitigating risk factors) Mostly addressed	Family resiliency (building protective factors and mitigating risk factors) Very addressed
Why a low ranking?
Family life cycle- the stages of family life and how CF impacts normal development	Family life cycle- the stages of family life and how CF impacts normal development Don't Know	Family life cycle- the stages of family life and how CF impacts normal development Not addressed	Family life cycle- the stages of family life and how CF impacts normal development Slightly addressed	Family life cycle- the stages of family life and how CF impacts normal development Mostly addressed	Family life cycle- the stages of family life and how CF impacts normal development Very addressed
Why a low ranking?
Medical care knowledge- Proper care, technique, medications, etc.	Medical care knowledge- Proper care, technique, medications, etc. Don't Know	Medical care knowledge- Proper care, technique, medications, etc. Not addressed	Medical care knowledge- Proper care, technique, medications, etc. Slightly addressed	Medical care knowledge- Proper care, technique, medications, etc. Mostly addressed	Medical care knowledge- Proper care, technique, medications, etc. Very addressed
Why a low ranking?
Organizational skills including managing medications, time management, and record-keeping	Organizational skills including managing medications, time management, and record-keeping Don't Know	Organizational skills including managing medications, time management, and record-keeping Not addressed	Organizational skills including managing medications, time management, and record-keeping Slightly addressed	Organizational skills including managing medications, time management, and record-keeping Mostly addressed	Organizational skills including managing medications, time management, and record-keeping Very addressed
Why a low ranking?
Parenting Skills including parenting styles and child discipline	Parenting Skills including parenting styles and child discipline Don't Know	Parenting Skills including parenting styles and child discipline Not addressed	Parenting Skills including parenting styles and child discipline Slightly addressed	Parenting Skills including parenting styles and child discipline Mostly addressed	Parenting Skills including parenting styles and child discipline Very addressed
Why a low ranking?
Stress management skills	Stress management skills Don't Know	Stress management skills Not addressed	Stress management skills Slightly addressed	Stress management skills Mostly addressed	Stress management skills Very addressed
Why a low ranking?
Support- getting and maintaining a support network	Support- getting and maintaining a support network Don't Know	Support- getting and maintaining a support network Not addressed	Support- getting and maintaining a support network Slightly addressed	Support- getting and maintaining a support network Mostly addressed	Support- getting and maintaining a support network Very addressed
Why a low ranking?
Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Don't Know	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Not addressed	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Slightly addressed	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Mostly addressed	Teaching and communicating with children about CF including how to discuss difficult issues like life expectancy Very addressed
Why a low ranking?
Other:	Other: Don't Know	Other: Not addressed	Other: Slightly addressed	Other: Mostly addressed	Other: Very addressed
Why a low ranking?

Question Title

* 7. If you were to design a class for Newly Diagnosed parents:

A. What subjects would you include?

B. Why?

C. What subjects would you AVOID?

D. Why?

Question Title

* 8. Please complete the following:

What country are you from?

What is your relationship to the child with CF (mom, dad, grandparent, etc)?

How old is your child with CF?

How long ago was your child diagnosed?

Would a Newly Diagnosed program have helped you cope better during the first year?

Looking back, would you have attended a Newly Diagnosed class if it were available?

Why or why not?

What was the one thing that helped you the most in getting through the initial shock of diagnosis?

Do you regularly have contact with other CF families?

Source of contact (internet, advisory council, fundraising, etc)

Does your CF clinic have a written transition plan that both professionals and families use?

Does your CF clinic have a consistent educational program for CF families?

Do you attend CF education programs?

Why or why not?

Where do you get most of your CF information (social networking groups, CF clinic, books, CFF webpage, etc)?

Question Title

* 9. This survey is the first step in creating a research-based program for Newly Diagnosed CF Parents. If you would be interested in the results of this survey and/or my final program curriculum, please send me your contact information (which will be kept strictly confidential) at happyheartfamilies@gmail.com. You can also call me at (425) 891-2842. Thank you for your time and interest. And from one CF parent to another, I wish you all the best. Take Care, Lisa Greene

PS: Please share your thoughts, comments, and ideas in the space below.