What Do Families Say About Home Nursing?
"If they lose this job, they can move on.
If we lose our child, we don't move on as well."

Major Areas of Parent Concerns

  • Loss of Privacy
  • Inexperience / Lack of Training
  • Boundaries
  • Empathy / Respect
  • Documentation Issue

Loss of Privacy
Some loss of privacy is unavoidable when you have someone in your home caring for your child. If nurses are able to keep this invasion of privacy to a minimum, it is helpful to parents.

"Privacy, What's that?"

"When you have a child with complex medical issues, it's like living in a fishbowl."

"People with so-called healthy or normal children have to deal with criticism and second-guessing, but we deal with 100x that amount. We have doctors, nurses, the state, teachers, social workers, (in some cases the courts-ugh), as well as the typical well-meaning (or in some cases, condescending) person to question our judgment."

"I think most families resent the intrusion of a nurse to some degree. It's partly due to the fact that they just wish they weren't in a situation that requires nursing care to begin with. For the most part I don't think it's personal with the nurse. It's just the situation."

"No matter how wonderful they as nurses, their very presence in the home is often a significant source of stress."

"A nurse is absolutely an essential member of some children's home life-but not a member of the family who cannot be replaced."

"From the moment of our child's birth (which was a horrifying, sad, anxious, and not very joyous) until this very moment, we have had people scrutinize and judge us in ways that others will go a lifetime without experiencing."

"Sometimes even having a nurse in your home makes me feel incompetent . . . that I can't take care of my child myself."

"Everyone knows everything that is going on in our life, everyone has an opinion or is passing judgment about our life. I feel like everything I do is constantly scrutinized and I don't feel comfortable with my life anymore."

Inexperience / Lack of Training
Nurses sent to their home with little or no training in tracheostomy care and/or ventilator care. Sleeping on the job was a major compliant for parents using night nurses.

"If you don't understand something, ask before you just go ahead and try something new."

"I hate having to wake the nurse up when an alarm is going off. I don't sleep well when some nurses are working."

"The nurse suctions too deep, doesn't seem to listen to me about technique."

"If we ask that something be done faster/slower/gentler/stricter/whatever, as long as it is not going to hurt the child, does it hurt to do it? Nurses need to do their very best to not cause stress."

"I do all the orientation myself because I want them to learn the way we prefer it done, and I don't want them to pick up another nurse's bad habits."

"STAY AWAKE!!!! That was our biggest problem with night nurses. We found few who could actually stay awake the entire shift. Night shift is tough."

This area of concern is highly individualized. Some parents welcome nurses and over time, they feel the nurses are close friends or even like one of the family. Other parents prefer to keep a distant professional relationship. Personalities of the parents and the nurse play a role here.

"Each family is different. What worked with case number 2 may not work with case number 18. No family is the same, and certainly no child is the same."

"I think the nurses need to see their role as the family assistant. They need to help in whatever way best suits each family they work with."

"We cannot be a 'normal' family with nurses in the home. I live with my wife because I love her... I live with a nurse because I HAVE to... I chose to live with my wife. I am forced to live with a nurse."

"Any stranger touching my child is an invasion - we parents tend to be very over-protective over our sick children."

"The best nurses would say that we knew our baby better than they did, so they wanted to know how we wanted things done, what the baby likes and what toys were his favorites."

"Please don't move things - I can't find them when you are gone. You may not like my system, but please try to respect it."

"I don't really need to hear about all your problems. I'm in crisis myself."

"I can suggest keeping the relationship with nurses more professional then personal."

Empathy / Respect
It is helpful when nurses understand that parents of medically fragile children are under a tremendous amount of stress. Parents may also be at different stages of the grieving process. Parents appreciate respect for their family and their home.

"To admit that we need help is tough."

"Some nurses were unfriendly, and thought that some of the things we asked for (like wearing gloves while suctioning) were over doing it. They did not care or have an understanding of what we just went through."

"It is nice when they sort of put themselves into our shoes and act on that. It is nice when they care. Like it or not, they do become a part of the family, so when they feel that way too, it is a blessing."

"Respect my knowledge of the child's condition and care. Respect the fact that this is my home and my child's home. Respect the fact that this child, your patient, is not the only member of this family. Respect my privacy."

"If the nurses totally sympathize with you and make sure they take care of your child as they would their own, then you feel happy and comfortable."

"The best nurses shared our tears when our son was dying, and they shared our happiness and laughter, when he was doing great. They held us when we cried and made us laugh when days were good."

Documentation Issues

Inappropriate or inaccurate information documented in the chart by nurses, that included personal information that was unnecessary, bias or judgmental.

Actual quotes from Nurses Notes:

"Child uncooperative for diaper change" (child was only 3 months old)
"Family watched Seinfeld and Jeopardy"
"Family went to Mall, bought clothes"
"Mother had ten minute phone call. Argued on phone. Upset by call."
"Father out most of evening, whereabouts unknown."

The above article has been reprinted with permission from one of our
PreemieCare Spotlight Community Support Groups
Aaron's Tracheostomy Page, www.tracheostomy.com is the internets leading tracheostomy resource since 1996. The mission of Aaron's Page is to help assure the highest quality home care for children with tracheostomies, to provide needed tracheostomy information in order to ease some of the anxiety related to caring for a child with a trach. A well-informed family will usually experience less anxiety. And perhaps most important, to facilitate parent-to-parent networking and support. Information is necessary for parents of medically challenged children, however what often helps parents most is knowing that they are not alone.

For additional information on:

Tracheostomy and the Multiple Birth Family: Parenting your Vent Dependant Infant /Child
published by MOST (Mothers of Supertwins), Inc.

Tracheostomy and the Multiple Birth Family is a packet of information designed to help our families who are caring for a child with a tracheostomy. It includes information on ventilator maintenance, trach care, feedings scheduling and much more. Booklet (40pgs.)

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