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
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."
Boundaries
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 roll 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."
