Ttulo:

A phenomenological study of the experience of being a mother of a child

with cerebral palsy. Por: Glasscock R, Pediatric Nursing, 0097-9805, 2000 JulAug, Vol. 26, Nmero 4
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A Phenomenological Study of the Experience of Being a Mother of a
Child with Cerebral Palsy
Contedo
Background
Method
Results
Discussion
Table 1. Profiles Of Mothers and Their Children with Cerebral Palsy
References
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Practice Applications of Research
Purpose: The purpose of this study is to describe the lived experience of
being the mother of a child with cerebral palsy.
Method: A convenience sample of 15 mothers whose children with spastic
cerebral palsy receiving care at the high-risk and neurology clinics of a
medical center in a southern state participated in two audiotaped
interviews. The mothers described how being the mother of a child from 1 to
5 years of age with cerebral palsy affects her life. Labov's (1982)
transcription and Colaizzi's (1978) phenomenological methods were used to
analyze transcripts of the interviews. An exhaustive description of the
experience was written, and subsequently, in a second interview, was
validated by the mothers.
Findings: Four clustered themes emerged from the interviews: caregiver
burden, family/social support, women's/mothers' roles, and socioeconomics.

Conclusion: Mothers reported the following: (a) strong family relationships

are counted on during difficult times; (b) caregiving stressors and day-to-day
caregiving is difficult; (c) a positive caregiver role and interest in learning
about cerebral palsy improve children's quality of life; (d) therapy and social
services assist them with their children; (e) multiple roles and alterations in
activities affect daily living; and (f) families financial status is affected.
The incidence of cerebral palsy (CP) is estimated to be between 1.2 and 2.0
per 1,000 live births (Healy & Smith, 1988; Nelson, 1989). This occurrence
indicates that CP is the most common physical disability affecting children.
Many studies have examined the effects having an infant or child with CP
has on the family (Barabas, Matthews, & Zumoff, 1992; Block, Brandt, &
Magyary, 1995; Case-Smith & Nastro, 1993; Gambhir, Walia, Singhi, &
Prashad, 1993; Hirose & Ueda, 1990; McCubbin, 1989; Mackie, Jessen, &
Jarvis, 1998; Minde, 1979; Ross & Thomson, 1993; Wanamaker & Glenwick,
1998). No phenomenological study, however, is reported that examined the
experience of being the mother of a child with CP.
The purpose of this study was to describe the lived experience of being the
mother of a child with CP. The research question used to start the interview
was: "what is it like being the mother of a child with CP?" This study helps
identify how mothers' lives are affected by mothering a child with CP. This
study was conducted to enable nurses to become more competent during
assessment, counseling, teaching, giving support, or other interventions as
needed to assist mothers of children with CP. By understanding the
experience of mothers, nurses may become more competent in caring when
the children are admitted to the hospital or see health care professionals.
Background
A literature review identified qualitative and quantitative studies exploring
the consequences of families living with infants and children with
disabilities. A review of nursing, allied health, medicine, psychology, and
dissertation abstracts from 1980-2000 revealed 564 studies involving
children with disabilities and their families. The majority of studies (n = 529)
involved clinical quantitative investigations related to physiology,
epidemiology, pathophysiology, and treatment outcomes; 405 studies
focused on children with CP and their families. Studies of family life with a
CP child living in the home are limited, and many of these studies focused
on problem areas associated with parenting. An area that is lacking in these
studies is a description of positive care giving experiences.
A study of mothers who have children with CP was needed; there were no
phenomenological studies that examined the experience of being a mother
of a child with CP. Studies allowing mothers, fathers, siblings, or other family
members to describe their experiences of living with a disabled family
member are also lacking. The number of individuals with a disability or
chronic illness has increased, however, the number of studies on children
and families has not increased over time. Population-based descriptive

studies of children with disabilities and chronic illnesses and the effects on
their families are needed. Thus, this phenomenological study of the
experience of being a mother of a child with CP may be a valuable addition.
Method
Phenomenology was used because it is a research and philosophical method
that attempts to describe and understand life experiences (Husserl, 1962).
The mothers described phenomena as they were remembered. The mothers
described life experiences and the meanings they attached to these
situations.
The sample included 15 mothers who delivered babies and who were the
caregivers for their babies with CP from 1 to 5 years of life. The mothers
were at least 18 years of age. The mothers took their children to a high-risk
or neurology clinic at a medical center in a southern state. The mothers
were willing to share their experience of being mothers of children with CP. A
convenience sample was used. Sample size was not predetermined;
mothers were recruited until the interview themes were repetitious and no
new themes emerged. Prior to data collection, all institutional approvals and
informed consents were obtained.
The first audiotaped interviews took place in the clinics. Each mother was
instructed to share her feelings, perceptions, and thoughts regarding what it
was like for her to be the mother of a child with CP. There was no time limit
and the mothers were encouraged to talk until they had nothing more to
say.
Immediately following the first interview, each mother was asked to
complete a demographic data sheet. A profile of each mother and her child
emerged from the demographic data sheet (see Table 1).
Following data analysis of the first interviews and formulation of a
description of the mothers' experiences, a second audiotaped interview was
held in the clinics approximately 1 to 2 months after the first interview.
Mothers were given a copy of the exhaustive description formulated from all
the mothers' experiences. Each mother was asked to read and comment on
the description as it related to her experience.
Data analysis was accomplished using Colaizzi's (1978) six steps
phenomenological method and Labov's (1982) five stages of transcription
analysis. Bracketing of the investigator's knowledge, values, and
preconceptions was also used.
Colaizzi's phenomenological procedural steps included:
Read each typed transcript for a feel of the experience and for global
themes.
Extract statements and phrases that referred to the mother's experience.

Formulate meanings from the mother's statement and phrases.

Organize formulated meanings into clustered themes.
Write clustered themes into an exhaustive description of the experience of
the mothers.
Validate the description of the experience of being a mother of a child with
CP with the mothers.
No additional information was obtained, and no changes needed to be made
so the Colaizzi procedure was complete.
Labov's transcription analysis helped put the mother's experiences into a
story format. The stages included (a) abstract, (b) orientation, (c)
complicating action, (d) resolution, and (e) coda. The abstract was the
research question that started the interview. Orientation was the events that
let the mother know that the child had a problem. Complicating actions were
the ways that the mother tried to solve her problems. Resolution was the
consequences of her actions, and coda was the mother's perceptions at the
time of the study.
Sandelowski's (1986, 1993) criteria was used to assure reliability and
validity of the study. These criteria guided the study and included truthvalue, applicability, consistency, neutrality, and rigor in qualitative research.
Basic ethical considerations were abided in this study. While mothers are
referred to by alphabetical letters (e.g., Mother-A, Mother-B), in this study
these are not parts of their actual initials.
Results
The four clustered themes that emerged from the interviews included:
caregiver burden, family/social support, women's/mothers' roles, and
socioeconomics. These themes are presented with excerpts from some of
the mothers' transcripts.
Caregiver burden. In this study, caregiver burden refers to the day-to-day
caregiving to children with CP. This includes mothers' time and energies and
emotional and physical care of the children. Mother-J discussed how
caregiving affects her well being.
Mother J has six children. She has a 1-year-old daughter (the youngest child)
with CP. Mother J believes that her daughter with CP will only progress to her
maximum growth and development if she dedicates a large amount of time
with her.
We do a lot of special shopping... Uh, silly things like special glasses, special
straps to go with the special glasses to match her outfits...
Like I wash clothes and clean my kitchen and things like that after midnight
when everyone's asleep cause it's impossible to get it all done...

I try real hard to give her a real good diet... because I want her to have the
best chance to develop the most she can all the way. I'm late for
everything...
He is getting to the breaking point too. It's affecting me too. We are going to
start getting a sitter... one night a week for us to go do something together...
Just me and him cause we have drifted very much so... Because things get
rough sometimes, like lately my husband's been working and then we find
out all these things about the baby...
My way of dealing with it was to not leave (child's name) side for any
reason, for anybody, for anything. My husband's way of dealing with it, well,
twice he did it he would go out and have a few drinks. Come to find out he
said he felt like he was left out. So it puts a tension on you. Because you pay
more attention to the baby. You got to, and I'm sorry the baby will always
come first.
You feel like you never give her enough attention... So no matter how much
you do you are always thinking oh I forgot something. I forgot to brush her
teeth, forgot to do her ankles, or my goodness I didn't sit her up and rotate
her trunk. No matter how much you do you are always thinking there is
something else that should be done that you forgot or you ran out of time to
do.
Family/social support. Family/social support refers to the assistance that
mothers of children with CP receive from family, friends, and rehabilitation
and social services. This includes: child care, transportation, financial help,
emotional support, home making, education, and physical therapies.
Mother K has three naturally born children including a 2-year-old son with
CP. She also has three adopted daughters with special needs. This family
has cared for children with special needs for 29 years. Their son with CP is
the youngest child. Mother K receives assistance and social support from her
husband, children, friends, and church members. Mother K talked about
family and social support, by saying:
Because he's blind, if we go out, the noise in the restaurant will bother him
and he gets fretful... We don't take him out anymore than we have to.
My husband does a lot of grocery shopping... He does laundry, the dishes,
changes diapers... He does more homework and stuff with the other kids to
free me so that I can work with him.
He's not much on cooking... he'll put it out or in the microwave, but I cook...
I do the last minute things with the girls helping me...
When you have special needs kids it's really hard to do things with friends.
My close friends come to my house usually instead of me going to them and
they've done this for a long time and we go with the flow whatever is going

on. Um, we're very involved in church and they accept our kids and love us
and we do a lot at church.
Women's/mothers' roles. In this study, women's/mothers roles refer to
personal and multiple family roles that affect mothers who have children
with CP. This includes: mothering, mothers' activities of daily living, and
family relationships.
Mother M has three children including a 4-year-old daughter with CP. Mother
M believes that her daughter trusts her to always be there to care for her.
Mother M has multiple roles and activities of daily living affected. She talks
about how her daughter needs her and how this affects her life by saying:
(Child's name) is more of a little gift... She trusts me and I have to be there
for her to make sure that when she needs to go to the bathroom that I'm
going to be there. I'm going to be there to breeze the mosquito from her. I'm
going to be there to see if something is crawling near her. When her bottle
falls over (pause), she will hold her bottle and when her arm gets tired her
bottle will fall over and she'll get wet and she can't do anything. If she has
an itch, she can't even scratch it. She can't close her eyes when I tell her to.
She can blink but she can not keep them closed... So, the reward is that she
appreciates me and she wants to be my friend...
I sleep real light, I hear everything that goes on... Well, when she's first
waking up in the morning she's real stiff so there are exercises we have to
do...
She'll leave me now and I like that cause at first she wouldn't leave me
without crying, but I can't leave her. She feels like if I take a bath I am going
somewhere... so she'll cry till I get out...
I went to the hairdresser the other day... And the children ran me ragged. I
had to come out from under the dryer. It's not even worth it to do it so l just
told her to cut most of it off so I could manage it at home...
Socioeconomics. Socioeconomics refers to school, employment, and
financial status. This includes: school and career plans and the effect of
caregiving on the family's future finances.
Mother E has two children. Her son with CP is 2 years old. He has multiple
health problems. Mother E talked about school, employment, and the
family's finances by saying:
Well, our income has dropped... What I did was add up how much money it
would take for us and I would just put it aside. We bought our own car
because we had to go to Children's Hospital and we had to be ready for six
and they wouldn't pick us up until seven and we would be there till six
o'clock that night. And we were so tired when we got home we would fall on
the floor asleep...

Well, I'd love to work, but he comes first... I would like to get the job that I
went to school for: Dietician. I would love to get that job...
All mothers identified significant caregiving stressors. They reported that
day-to-day caregiving is time consuming and difficult. All mothers reported
strong family relationships and received help and support when needed. All
mothers received various types of social and rehabilitation services. All
mothers reported a perception of a positive caregiver role. These mothers
enjoyed mothering their children with CP. All mothers reported multiple roles
were affected. All mothers have activities of daily living affected. All mothers
reported that financial status of the family has been affected by having a
child with CP.
Discussion
Based on the findings of this study, the following assessments are
recommended when working with mothers who have disabled children: (a)
caregiver stressors; (b) adequacy of social support; (c) characteristics of
mothering; and (d) early intervention services under the Americans with
Disabilities Act. Some recommendations for education are made to facilitate
care. Curricula should include both didactic instruction and a practicum with
individuals of diverse cultures with a variety of disabilities. Family studies
need to include inpatient, outpatient, and community-based care.
Legislative and policy matters should address issues related to health care
delivery and the effect on individuals with disabilities and their families.
Recommendations for further research include longitudinal studies of this
population to identify changes over time. This would facilitate long term
goals in the care. Studies that include more diversity in demographic
characteristics would provide greater generalizability. Such characteristics
as adolescent age group, married and single, ethnicity, and socioeconomic
status are particularly important to target.
The Practice Applications of Research section presents reports of research
that are clinically focused and discuss the nursing application of the
findings. If you are interested in author guidelines and/or assistance, contact
Janice S. Hayes, PhD, RN; Section Editor; Pediatric Nursing; East Holly
Avenue Box 56; Pitman, NJ 08071-0056; (856) 256-2300 or FAX (856) 2562345.
Table 1. Profiles Of Mothers and Their Children with Cerebral Palsy

Legend for Chart:

A - Mother
B - Marital

C - Age
D - Mother Race
E - Mother School
F - Mother Work
G - Child Age
H - Child M/F
I - Child Sib(#)

A
I

A
5

26-30

B
2

31-35

C
1

21-25

D
1

36-40

E
1

31-35

F
2

18-20

G
2

>46

H
2

>46

J
4

41-45

K
5

>46

L
1

18-20

M
2

36-40

N
1

18-20

O
1

18-20

P
1

31-35

Note: N = single; M = married; D = divorced; Age of Mother

=
range in years; A = African American; C = Caucasian; L =
less
than high school graduate; H = high school graduate; S =
some
college; E = employed; U = unemployed; M = Mother; F =
Father.
References
Barabas, G., Matthews, W., & Zumoff, P. (1992). Care-load for children and
young adults with severe cerebral palsy. Developmental Medicine & Child
Neurology, 34(11), 979-984.
Block, K., Brandt, P., & Magyary, D. (1995). A nursing assessment standard
for early intervention: Family coping. Journal of Pediatric Nursing, 10(1), 2839.
Case-Smith, J., & Nastro, M. (1993). The effect of occupational therapy
intervention on mothers of children with cerebral palsy. American Journal of
Occupational Therapy, 47(9), 811817.
Colaizzi, P. (1978). Psychological research as the phenomenologist views it.
In R. Valle & M. King (Eds.), Existential phenomenological alternative for
psychology (pp. 48-71). New York: Oxford University Press.
Gambhir, S., Walia, B., Singhi, R, & Prashad, D. (1993). Maternal attitudes
towards spastic cerebral palsy. Indian Pediatrics, 30(9), 1073-1077.

Healy, A., & Smith, B. (1988). Cerebral palsy: Setting the stage for the
future. Contemporary Pediatrics, 5(2), 44-64.
Hirose, T., & Ueda, R. (1990). Long-term follow-up study of cerebral palsy
children and coping behaviour of parents. Journal of Advanced Nursing,
15(7), 762-770.
Husserl, E. (1962). Ideas: General introduction to pure phenomenology. New
York: Macmillian.
Labov, W. (1982). Speech actions and reactions in personal narrative. In D.
Tannen (Ed.), Analyzing discourse: Text and talk (pp. 219-247). Washington,
DC: Georgetown University Press.
McCubbin, M.A. (1989). Family stress and family strengths: A comparison of
single- and two-parent families with handicapped children. Research in
Nursing & Health, 12, 101-110.
Mackie, P., Jessen, E., & Jarvis, S. (1998). The lifestyle assessment
questionnaire: An instrument to measure the impact of disability on the lives
of children with cerebral palsy and their families. Child Care and Health
Development, 24(6), 473-486.
Minde, K. (1979). Coping styles of 34 adolescents with cerebral palsy. Annual
Progress in Child Psychiatry and Child Development, 62(6409), 677-690.
Nelson, K.B. (1989). Cerebral palsy. In K.F. Swaiman (Ed.), Pediatric
neurology (pp. 363-371). St. Louis: Mosby-Year Book.
Ross, K., & Thomson, D. (1993). An evaluation of parents' involvement in the
management of their cerebral palsy children. Physiotherapy, 79(8), 561-565.
Sandelowski, M. (1993). Rigor or rigor mortis: The problem of rigor in
qualitative research revisited. Advances in Nursing Science, 16(2), 1-8.
Sandelowski, M. (1986). The problem of rigor in qualitative research.
Advances in Nursing Science, 8(3), 27-37.
Wanamaker, C., & Glenwick, D. (1998). Stress, coping, and perceptions of
child behavior in parents of preschoolers with cerebral palsy. Rehabilitation
Psychology, 43(4), 297-312.
~~~~~~~~
By Roberta Glasscock
Roberta Glasscock, DNS, MN, CNS, RN, is a staff nurse, Pediatric
Cardiovascular Intensive Care Unit, Arnold Palmer Hospital for Children &
Women, Orlando, FL.

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Fonte: Pediatric Nursing, 2000 Jul-Aug; 26(4)
Nmero do item: 2000065816