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Consumer, Caregiver COVID-19 Survey Results

Thank you to everyone who completed the survey. Below are the results as of April 13 at 8:00 EDT, as well as some resources. Check back for updates. See also Staying Safe and Sane While Navigating COVID-19: An FAQ for Consumers of Home IV Nutrition and/or Tube Feeding.


 


Are you experiencing or fearing problems with supply shortages?

 

A. Yes (77 out of 135; 47% of HPN/IV Nutrition respondents, 59% Tube Feeding respondents)

B. No (55 out of 135)

C. N/A (3 out of 135)

 

 

Summary of Comments: The things most often cited as in short supply, and mostly by IV nutrition consumers/caregivers, but also a few tube feeding consumers/caregivers, were masks, gloves, alcohol products wipes and swabs, hand sanitizer/soap, and chloraprep swabs. Tube feeding consumers also noted the ongoing shortage of Kangaroo pump bags.

 

 

Check out the Oley Foundation's Equipment Supply Exchange, including additional resources at the bottom of the page.

 

 

 

Are you experiencing or fearing problems with your homecare deliveries?

 

A. Yes (42 out of 135; 24% of HPN/IV Nutrition respondents, 37% Tube Feeding respondents)

B. No (86 out of 135)

C. N/A (7 out of 135)

 

Summary of Comments: The biggest issues with deliveries are fear of exposure from the delivery person, and the additional burden of having supplies dropped off outside the home now to lessen the exposure from the delivery person. A few people also reported following a cleaning protocol before bringing things inside.

   “UPS can no longer bring my boxes of TPN into the house, and they are too heavy for me to carry in, so I have to open them on the front porch in the 80-90 degree heat and carry items in by the armful.”

   “The infusion company still requires a signature for receipt of the IV nutrition supplies and the driver doesn't seem to understand the concept of social distancing, so there are concerns there.”

 

Note: Due to the COVID-19 pandemic, Medicare and Medicaid patients are not required to sign for their homecare deliveries

 
 

Are you experiencing or fearing problems with in home health nursing, for dressing changes or otherwise?

 

A. Yes (37 out of 135; 25% of HPN/IV Nutrition respondents, 29% Tube Feeding respondents)

B. No (58 out of 135)

C. N/A (40 out of 135)

 

Summary of Comments: Fear of exposure from visiting nurses has led many consumers/families to cancel nursing services. Other members couldn’t continue their nursing care because of a shortage of help or insurance issues.

   “Unfortunately we have no nurse currently due to minimizing exposure since she has multiple patients.”

   “Every visit is a new risk of infection.”

 

Note: If you are concerned about the nurse coming to your house, ask to speak to the nurse manager at your home care company so he/she can address your concerns.

 

Are you experiencing or fearing problems with access to your clinician team?

 

A. Yes (63 out of 135; 34% of HPN/IV Nutrition respondents, 51% Tube Feeding respondents)

B. No (70 out of 135)

C. N/A (2 out of 135)

 

Summary of Comments: Almost everyone is doing telemedicine, or postponing appointments. Several people commented that telemedicine visits aren’t as good because “I can’t get tests and they can’t see me well to fully assess what is happening”  Usually the appointment changes are by the physicians choice, though sometimes by the patient out of fear of infection/exposure. A lot of frustration because tube changes, HPN blood work, and testing for treatments are being post poned indefinitely because they are considered non-essential.

   “We have had multiple visits cancelled as ‘non-essential’ and rescheduled for eight weeks out. We have had multiple phone visits with providers, which are helpful but not as comprehensive as they need to be to address problems”

   “I am due for a feeding tube replacement…but of course they are not scheduling any ‘elective’ procedures at this time.” 

 

Note: Most clinicians are offering telemedicine visits for patients (see article)


 

Are you experiencing or fearing problems with accessing the emergency room?

 

A. Yes (84 out of 134; 51% of HPN/IV Nutrition respondents, 57% Tube Feeding respondents)

B. No (44 out of 134)

C. N/A (6 out of 134)

 

Summary of Comments: Nearly everyone who commented mentioned a fear of exposure to COVID-19 and/or infection as a concern. Consumers feared they won’t be treated if they go to the ER/hospital, or will receive substandard care because the health care system is so overtaxed at this time.

   “We are definitely fearful of my husband getting sick or another central line infection, bowel obstruction, etc. during this time…We want to avoid the hospital and getting sick at all costs. Not only because of the virus itself, but our health care system is quite over loaded at the moment…..We are staying home and trying to stay healthy!”

 

 

Note: Some hospitals are offering telemedicine visits for emergent care as well as regular appointments

 
 

Are you experiencing or fearing problems with accessing mental health resources?

 

A. Yes (17 out of 134; 8% of HPN/IV Nutrition respondents, 17% Tube Feeding respondents)

B. No (88 out of 134)

C. N/A (29 out of 134)

 

 

Summary of Comments: Consumers reported visits have been switched to telemedicine. Some reported delays in services and/or access to medication. Others report difficulty in finding a good therapist.

 

 

Click here for coping resources.

Click here for COVID-19 specific coping articles:

      • Dealing with Stress, Anxiety, and Grief during COVID-19 – NIH Director's Blog

      • Harvard Business Review's Q&A on Grief


 
 

Are you experiencing or fearing problems with additional financial stress over your medical care/supplies? 

 

A. Yes (47 out of 135; 23% of HPN/IV Nutrition respondents, 46% Tube Feeding respondents)

B. No (84 out of 135)

C. N/A (4 out of 135)

 

Summary of Comments: Several respondents noted they are no longer working because of the COVID-19 pandemic. Others noted the high out of pocket expenses for items not covered by insurance, or having to pay for items not being delivered by their home care company because of shortages.

   “Many of the daily items we use to care for our daughter, (wipes, rash cream, hypoallergenic cleansers, etc,) are things which aren’t covered by insurance.”

   “Having to pay out of pocket to get alcohol wipes and gloves as our home care company won’t supply them anymore.”

 

Check out NORD's Financial Assistance program.

Check out the Oley Foundation's Equipment Supply Exchange, including additional resources at the bottom of the page.

 
 

Are you experiencing or fearing problems with care for a special needs and/or medically fragile child when school is closed? (Note: the number of survey participants with children is low see age question below)

 

A. Yes (17 out of 135; 6% of HPN/IV Nutrition respondents, 12% Tube Feeding respondents)

B. No (54 out of 135)

C. N/A (68 out of 135)

 

Summary of Comments: Parents report being “overwhelmed” by the responsibilities of teaching as well as caring for their special needs child—especially those children who have learning issues. Another issue facing families is the cancellation of special services, like occupational therapy, physical therapy, etc.

   “My children have a 504 plan and IEP, that provice for resource staff and occupational therapy. I am not trained to provide these services to my children myself.”

 
 

Are you experiencing or fearing problems with a catheter- or tube-related infection?

 

A. Yes (51 out of 135 ; 38% of HPN/IV Nutrition respondents, 30% Tube Feeding respondents)

B. No (73 out of 135)

C. N/A (11 out of 135)

 

Summary of Comments: Fear of central line infection is greater now because of rationing or lack of infection control products, including ethanol locks. Many also cited fear of having to go to the hospital if they did get an infection. Tube feeders are concerned about not receiving tube/stoma care because it is considered “non essential” and some are doing more self care when they are able, like changing their own tube, to avoid leaving the home.

   “Even though I have never had a catheter related infection in the 3 years I have been on HPN, I am afraid it could happen especially since I am short in supplies to prevent infection”

   “I have a feeding tube infection right now and no way to get to a doctor to get it looked at. I did a video conference call with my doctor but she couldn’t see it, or feel it, which is scary. She is sending me for an ultrasound tomorrow, and I am terrified to be at the hospital for testing at this time with the COVID-19 scare.”

 

Click here for catheter care resources.

Click here for article on avoiding the virus that includes handwashing tips.

Click here for tube feeding and skin care resources, and webinars.

 
 

Are you experiencing or fearing problems with any other issues related to IV nutrition or tube feeding?

 

A. Yes (38 out of 135; 25% of HPN/IV Nutrition respondents, 27% Tube Feeding respondents )

B. No (93 out of 135)

C. N/A (4 out of 135)

 

 

Summary of Comments: Fear of drug shortages has consumers concerned that their parenteral nutrition will be missing "ingredients". Consumers are also concerned that deliveries will stop if their driver gets sick, or that a family member will bring home COVID-19 and infect their medically fragile loved one. Some consumers are rationing their use of hydration due to fears of shortage and/or fear of going to an infusion center. Consumers also report fear of not receiving equal treatment or care if they are hospitalized – that their condition, disability or need for nutrition therapy will make them a lower priority.

 

 

Please check all of the options that apply to you.

 

A. I am a consumer/patient on home parenteral nutrition, also known as IV nutrition, HPN or TPN. (59 out of 134)

B. I am a consumer/patient on home enteral nutrition, also known as tube feeding. (51 out of 134)

C. I am a caregiver of a consumer/patient on home parenteral nutrition, also known as IV nutrition, HPN or TPN. (18 out of 134)

D. I am a caregiver of a consumer/patient on home enteral nutrition, also known as tube feeding. (31 out of 134)

E. I am a healthcare provider answering on behalf of a consumer/patient on home parenteral nutrition, also known as IV nutrition, HPN or TPN. (1 out of 134)

F. I am a healthcare provider answering on behalf of a consumer/patient on home enteral nutrition, also known as tube feeding. (1 out of 134)

 

 

 
 
 

The age of the person receiving IV nutrition or tube feeding is:

 

A. 0–4 years old (7 out of 134)

B. 5–18 years old (11 out of 134)

C. 19–29 years old (20 out of 134)

D. 30–39 years old (20 out of 134)

E. 40–49 years old (25 out of 134)

F. 50–59 years old (21 out of 134)

G. 60–69 years old (21 out of 134)

H. 70 years young or more (9 out of 134)

 
 

Is the area where you live considered to be a COVID-19 hot spot at the time you are taking the survey?

 

A. Yes (54 out of 134; 35% of HPN/IV Nutrition respondents, 37% Tube Feeding respondents )

B. No (62 out of 134)

C. N/A (0 out of 134)

D. I don't know. (18 out of 134)

 updated 4/20/20
 

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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