Jo Wade, RN, PhD, The University of Tennessee

1
CRYING ALONE WITH MY CHILD THE MEANING OF
PARENTING A YOUNG CHILD WITH BIPOLAR DISORDER
Jo Wade, RN, PhD, The University of Tennessee
Research Problem Early onset BPD is a significant
problem characterized by mania, irritability,
crying, motor agitation, long periods of
rage. The number of parents caring for young
children diagnosed with BPD is increasing (1-5
prevalence). Increase in use of psychotropic
medication and suicide rate in young children
(CDC, 2004). Few studies in the chronic
illness, disability, family, or psychiatric
nursing literature include young children with
psychiatric illness, none with BPD.
Method Existential Phenomenology
(Thomas Pollio, 2002) 10 participants (3 male
7 female) from 7 families purposefully
recruited from two southern states. 8 children
ages 6-12 diagnosed with BPD on antipsychotic
medications. Interviews audiotaped, transcribed
verbatim hermeneutically analyzed. Thematic
structure developed in context of
interdisciplinary research group. Contextual
Ground Others my child my chaotic world
describes the chaotic, tumultuous, demanding,
unpredictable symptoms disorganized, seemingly
disconnected care system resulting in parents
loss of self. she hears voices, stays in the
closet, collects feces, smears it on the wall,
head banging, crying, turning blue, scratching
herself, scratching other kids I mean its
like a fence and here's the psychiatrists cant
talk to teachers and the teachers cant talk to
psychiatrists. And when they do talk there is all
this bickering and arguing and it's not meeting
what we need. in going through all this there
is no me
Thematic Structure its always,
always engulfed in chaos Described their
experience of time split between before and after
the diagnosis, all encompassing diligence, the
need to fight every day it's a matter of
adjusting all the time, every day, hour to hour,
you know, minute to minute, you know. She was
picking out trees that she wanted to hang herself
from. I talked to the maintenance people about
cutting them. Trying to get him diagnosed, was
just miserable, it was just miserable! Cause I
was going round and round and round and round and
nobody was listening - Nobody! When the doctor
finally said the word bipolar it was like a
tremendous relief. I don't know how to explain
it, IT had a name, not her, and I don't think
people realize that unless you give it a name,
there's nothing a parent can do. my hands
are tied scared and frustrated Described
constant fear for the child and exposure to
fearful situations along with extreme frustration
with health care and education professionals who
talked in codes I dont want to be a parent
of a child who kills himself. I dont want to see
my son in jail. I dont want to see his funeral
before I die. Very scared, very scared. This time
I need a tissue. Because, I love him so much
I'd heard he was bad today, he was bad today,
he was bad today. Never once, yes, we had a
rough morning, but he done his best - never once.
hand me a whole handful of prescriptions that
I have no earthly idea what they're for. And
that's really frustrating you know, if I need
help, our hands is tied.
On the other side of a dark curtain alone and
shunned Describes isolation, loneliness,
alienation, stigma, blame, and need for help.
The children are called "freaks", "bad",
"devils", or "the other. "outcast", "kicked
out", "shunned away", receive unmerciless
teasing. I basically have no friends. I
mean, for one thing, I don't have time to have a
friend, another is, I don't want to have to
explain everything. And if you go in to talk
to the psychiatrist, it's almost like "Are you
giving medicine to this child, or are taking it
for yourself? I had no place to turn - no
place to turn, and all this time, the counselors,
meaning well, saying, "you better not restrain
him, because if you put a bruise on him you can
go to jail for child abuse," And I thought its a
no win situation. Its no win we're trying to
save this child's life and these people, instead
of helping us, you know, they're going against
us. I Cry so Many Tears on This Child It
Hurts, But Its Worth It Describes physical and
psychological distress and pain (anxiety,
depression, physical problems) . Also describes
their strength, their love for the child and
commitment to the childs success. I cry a lot
I really do because it hurts. I just have to
break. Thats what I get out of it. I get "I
love you" or a hug or a kiss and that's worth way
more than money. You can take "I love you to the
grave with me, and even beyond, I dont know.
Implications Nurses were absent in parents
experience. Strong support for interdisciplinary
school based mental health care. Parents
desire early diagnosis and respect as equal team
members. Need for non traditional interventions
(web, phone, home school based). Impact of
loss of self and constant fear on health and
efficacy of parents.