Dear Parents of medically complex kids,
I need your help!
Please take a few moments to fill out this survey so that we can better understand the needs of parents like you!
You’ll need to print it out, fill it out then send back to me via email at firstname.lastname@example.org
(If there is an easier way please let me know. I’d be happy to make this as easy as possible for you!)
Your answers will remain anonymous and 100% confidential. Your email address will not be used for any purpose unrelated to this survey. The information gathered is to help better assist future families of newly diagnosed medically complex babies.
I sincerely thank you!
Here is what the survey looks like if you want to see it before opening the link to download.
Hi. My name is Chris Eich, RN. In an attempt to make things easier for parents and families with medically complex children, I have created this survey. It is my hope to provide better service to parents, their unique and precious child and his or her siblings, before discharge of the hospital, during the transition from hospital to home and for as long as they need help. I sincerely appreciate your taking time out of your busy schedule to honestly and openly fill out this survey. Though it won’t change whatever your experience has been, it could impact future families. It is my goal and mission to fill in the gaps between hospitals and home health care the best I can. I would like to perhaps provide assistance in ways that hospitals, home health and insurance can’t cover.
Keep in mind that these questions are an effort to find out more of where you need/needed help and assistance. Feel free to write in the margins, write on the back and add as much information as you’d like. Skip any questions you don’t feel comfortable answering. Feel free to remain anonymous.
Did you feel supported by hospital staff when your child was first diagnosed?
Were all of your questions answered in a caring manner?
Was there anything the staff could have done differently to help you with your emotional needs?
Can you explain how you felt when you were being educated about the needs your child would have and what his or her conditions would mean for their future? (for example: overwhelmed, confused, scared, difficulty connecting with your child, feeling alone, depressed, angry, not knowing who to turn to for answers, content in knowing he or she is well taken care of, faithful that everything will be ok, or all of the above!)
What kind of support did you have? (family, friends, church/mosque/temple, hospital staff support or support groups)?
Did you feel well educated and confident in caring for your child at the time of discharge? Did you still feel confident once you got home?
If not, what areas did you feel you could have used more education/hands on experience with?
Was your home health company successful in helping you on the day your child came home as far as explaining how home health works, providing phone numbers and helping you set up your child’s room (as far as emergency equipment and basic medical supplies)?
If not, where were they lacking?
Were you given hospital resources and did you use them? What did you use them for?
How has your experience been with your home health company overall? (excellent, good, fair, poor, very poor)?
What has been the biggest obstacles you have had with home health? (staffing, communication, lack of resources, nurse competence, professionalism, etc)?
Please place a check mark on the line for the following items for which you wish you could have had help (or further help) with. Please also circle whether you did or did not receive any help at all with these items (Even if you received help you could indicate that you needed more help for any issue). If you don’t think it applies please indicate with n/a
- ________Organizing my child’s room (received help/did not receive help)
- ________Organizing all the paperwork (received help/did not receive help)
- ________Help with household chores (received help/did not receive help)
- ________Explaining all of my options as far as medical decisions regarding my child (received /did not receive)
- ________Having a family member help me with some of the appointments so I didn’t have to take so much time off of work (received/did not receive)
- ________Bringing my family some meals in the early days (received/did not receive)
- ________Having a non-biased counselor to help me with emotions and stress (received/did not receive)
- ________Respite care, specifically so I could take a break/rest (received/did not receive)
- ________Respite so my partner and I could have a date (received/did not receive)
- ________Giving my family privacy when we needed it (received/did not receive)
- ________Feeling respected and in power over my child’s well-being and all decisions related to his or her aspects of care. (received/did not receive)
- ________Couples’ counseling (received/did not receive)
- ________Setting up therapies and doctor appointments (receive/did not receive)
- ________Support and education for siblings (received/did not receive)
- ________Counseling for siblings (received/did not receive)
- ________Help in understanding insurance and what equipment or services my child qualified for (received/not received)
- ________Education about how to work new equipment (received/not received)
- ________Ongoing education about medical diagnoses, treatments and new issues that came up (received/not received)
- ________Organizing and assisting me in meeting other parents in a similar situation (received/did not receive)
- ________Organizing and helping with play dates for my child on well days (received/did not receive)
- ________Music Therapy for my child (received/did not receive)
- ________Massage Therapy for my child (received/did not receive)
- ________Other alternative therapies for my child ___________________(received/did not receive.
- ________Monetary assistance for bills (received/did not receive)
- ________Groceries (received/did not receive)
- ________Clothing for my child (or their siblings) (received/did not receive)
- ________Personal care items for parents (received/did not receive)
- ________Toys, sensory items, blankies, pacifiers, bottles, etc. (received/not received)
What else did you receive help with or did not receive help with that you would like to share?
Is there anything else you can share that would better help me to assist families who are new to having a medically complicated child? Perhaps some things they need/could use help with but don’t even realize they need? (Again, I sincerely thank you for your time. I wish you and your family good health and many happy days ahead. I want to acknowledge your strength, courage and dedication to your family. You are amazing and an inspiration to me!