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Persistence of Maternal Concerns Surrounding Neonatal Jaundice
An Exploratory Study
Patricia R. Hannon, MD;
Sharla K. Willis, DrPH;
Susan C. Scrimshaw, PhD
Arch Pediatr Adolesc Med. 2001;155:1357-1363.
ABSTRACT
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Objectives To explore whether mothers currently express concerns about neonatal
jaundice and perceive it as a serious condition; if so, to identify factors
influencing these perceptions; and to elicit maternal recommendations for
improved health care interactions.
Design Ethnographic interviews using grounded theory methods. Audiotaped data
were transcribed and analyzed for themes using a qualitative data analysis
software program.
Setting University and community hospitals.
Participants Forty-seven Spanish- and English-speaking breastfeeding mothers of otherwise
healthy infants with a diagnosis of neonatal jaundice and treated in inpatient
and/or outpatient settings.
Interventions None.
Main Outcome Measure Qualitative descriptions of maternal experiences with neonatal jaundice.
Results Mothers continued to voice concerns about jaundice and perceive it as
serious. They expressed misconceptions, wished to have jaundice explained
further, and offered suggestions to improve communications with medical staff.
Guilt was common, with mothers believing that they had caused the jaundice.
Mothers voiced alarm about the yellow skin and discomfort about jaundice management
and worried about perceived short- and long-term effects. Maternal perceptions
were exacerbated by cultural differences, language barriers, and subtlety
of language and its meaning. Key factors in creating perceptions of jaundice
as serious included unexpectedness of and lack of knowledge about jaundice,
quality of information received, levels of intervention, and prolonged duration
of illness and yellow color. Interactions with health care professionals and
other mothers with personal experience with jaundice were important mediators
in the way mothers reacted to information.
Conclusion Practitioners need to address these persisting misconceptions and concerns
about neonatal jaundice with mothers.
INTRODUCTION
JAUNDICE COMMONLY occurs in term newborns, with 15% to 30% of breastfeeding
newborns having elevated bilirubin levels requiring medical intervention.1, 2 Clinicians treat jaundiced breastfeeding
neonates in a variety of ways, including observation only, blood tests, modification
of infant diet, and/or phototherapy.3, 4, 5, 6, 7
Although jaundice typically has a benign course in otherwise healthy newborns,
clinical experience and a previous study have revealed that mothers have an
inadequate understanding of this condition and perceive it to be far more
serious than it is. In 1989, Kemper et al8
demonstrated that at 1 month post partum, mothers of healthy, formerly jaundiced
infants expressed distress at jaundice management, perceived jaundice as a
serious medical problem, demonstrated separation difficulties and higher use
of health care resources, and prematurely discontinued breastfeeding.8, 9
The findings by Kemper et al8, 9
are consistent with previously published literature demonstrating that stresses
created by medical issues early in childhood create parental anxieties and
insecurities about infant health that can have lasting effects on the mother-child
relationship.10, 11, 12, 13, 14, 15, 16, 17
Medical professionals must understand why parents react in this manner. To
develop a substantive understanding about the current maternal experience
with neonatal jaundice, we designed a qualitative study guided by grounded
theory methods.18, 19 The study's
purposes were to explore mothers' current perceptions regarding neonatal jaundice;
to identify factors influencing these perceptions, susceptibility to vulnerable-child
syndrome, and feeding decisions; and to elicit maternal recommendations for
improved interactions with medical staff.
SUBJECTS AND METHODS
SETTING
The following 2 sites were chosen to increase the heterogeneity of mothers'
experiences: a community hospital serving an economically and ethnically diverse
population, and an urban teaching hospital serving primarily low-income African
American and Hispanic patients. Breastfeeding initiation rates were 70% and
40%, respectively. Local prevailing physician adherence to the American Academy
of Pediatrics hyperbilirubinemia practice parameter was not available.3 We obtained approval of the institutional review boards.
SAMPLE
Qualitative studies seek to describe the range of experiences in the
population and capture variability of responses. We used purposeful sampling
by means of criterion and maximum variation strategies20, 21
to identify Spanish- or English-speaking mothers of term infants who exclusively
or partially breastfed their infants at postpartum discharge and who represented
a range in age, parity, ethnicity, language, and treatment. Infants were otherwise
healthy, term newborns who had a bilirubin level of at least 10 mg/dL ( 171
µmol/L) within the first 4 weeks of life and who received jaundice management
through a study site in a newborn nursery, outpatient clinic, hospital ward,
and/or home. Medical record abstraction for all jaundiced infants at study
sites determined eligibility. Eligible mothers were recruited using a script
describing the study. If mothers agreed to participate, an interview was scheduled
for approximately 4 weeks after recognition of jaundice. Sampling continued
until theoretical saturation, when no new relevant data were emerging.21 Final sample size was 47.
DATA COLLECTION
The ethnographic interview guideline22
was developed using literature on neonatal jaundice and breastfeeding1, 2, 3, 4, 5, 6, 7, 8, 9, 23, 24, 25, 26
and included experience with jaundice recognition and treatment; mothers'
understanding of and emotional response to jaundice; perceptions of jaundice
seriousness and its current effects on their infants; infant feeding decisions;
interactions with and information received from medical staff, family, and
friends; recommendations to improve future jaundice experience; and demographic
information.
Three trained female ethnographers (including P.R.H. and S.K.W.) conducted
in-depth 60-minute semistructured interviews in Spanish or English, as appropriate.
Mothers were encouraged to lead the conversation, with the ethnographer using
prompts to guide the discussion toward any issues on the interview guideline
not brought up by the mothers. This method standardized the information collected
without limiting the information given by the mothers.21, 27
Audiotaped interviews were transcribed verbatim into English by bilingual
transcribers and edited by the ethnographer to ensure accuracy and include
field notes.
ANALYSIS
Interviews were loaded into qualitative data analysis software (ATLAS.ti).28 With the use of an iterative process, codes with
inclusion and exclusion criteria were developed representing themes generated
in the interviews.19, 22, 29
Codes were applied to interview text by a single investigator (S.K.W.). Intracoder
and intercoder agreement were determined by means of regular team meetings
to ensure internal consistency of data analysis and consistency of code definition.29, 30 Sampling of 15% of the interview
coding showed 95% agreement between investigators.
Once coded, text was retrieved using the qualitative data analysis software.
Themes were analyzed in relation to key variables by all investigators. The
women's experiences with neonatal jaundice were compared and contrasted to
gain insights into the range of maternal concerns and factors influencing
their perceptions about jaundice and their infants. Representative quotations
for each theme were selected. In a previous portion of this study, we identified
important factors that have an impact on the breastfeeding relationship, so
those results are not included herein (P.R.H., S.K.W., and S.C.S., unpublished
data, August 1998).
RESULTS
Sixty-nine women were eligible for the interviews. Eleven mothers declined
participation, citing time constraints, and 13 could not be contacted or failed
to attend the interview. Of the 24 mothers who did not participate, 14 were
Latina and 12 of their infants had received phototherapy. Forty-five mothers
were interviewed from October 1, 1997, through April 30, 1998. To validate
interview findings, investigators attempted to convene 2 focus groups, with
unsuccessful attendance rates. One mother attended each session. Both women,
who had never been interviewed, were interviewed individually, and the results
were included in the analysis of the other interviews. Interviews were conducted
2.5 to 14.5 weeks post partum (mean, 6 weeks).
Table 1 highlights participant
characteristics. Of the 47 mothers, 72% were Latina of Mexican descent. Half
of them were born outside the United States and had lived in the United States
from 1 to 25 years (mean, 7 years). Mean age was 27 years, (range, 16-38 years).
Among multiparous women, 19 had previous breastfeeding experience, and 14
had experienced jaundice with a previous neonate. Thirty-nine study infants
experienced jaundice within the first 6 days of life, with most having nonhemolytic
jaundice. Eight infants had breast milk jaundice, with elevated bilirubin
levels occurring after 1 week of age. Peak bilirubin levels for all infants
ranged from 10.3 to 23.5 mg/dL (176-402 µmol/L), with 4 having levels
above 20 mg/dL (>342 µmol/L).
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Table 1. Maternal Characteristics*
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MATERNAL CONCERNS DURING JAUNDICE EXPERIENCE
Mothers repeatedly expressed concerns regarding their experience with
neonatal jaundice. These concerns grouped into themes that included their
perceptions of causes of jaundice, their reactions to jaundice management,
and their responses to the yellow skin. These are discussed below, along with
the interplay of these themes and the mothers' guilt, distress, and worries
regarding the effects of jaundice management. Quotations to illustrate maternal
concerns are presented in Table 2.
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Table 2. Maternal Concerns During Neonatal Jaundice Experience
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Perceptions of Causes of Jaundice
Each woman discussed up to 10 different causes of neonatal jaundice.
The most common responses agreed with biomedical explanations, ie, bilirubin
levels were too high or "not clearing out of the system"; blood cells were
"not functioning" or were "reacting to mothers' cells"; and a liver issue
involved its "prematurity" or a "development problem."
Twenty-six mothers believed that breastfeeding led to jaundice. Nine
of them had had a previous infant with jaundice. Their understandings of how
breastfeeding caused jaundice related to the quantity or quality of their
breast milk (P.R.H., S.K.W., and S.C.S, unpublished data, August 1998). The
next most common category of responses was uncertainty about the cause of
jaundice, with most stating that they had not been given an explanation. These
mothers were exclusively Spanish-speaking, young, non–high school graduates
whose infants had undergone blood testing only. Many of these mothers specifically
asked interviewers for more information about the cause of jaundice.
A theme of maternal guilt arose in 18 interviews, regardless of intervention
type or language spoken. These mothers believed that they had caused the jaundice,
using phrases like "got it from me," "did something wrong," "not being a good
mother," or "doing my baby harm." Five of them had had a previous infant with
jaundice. Mothers who described their neonates as being "born with it" described
what they did or did not do during pregnancy. Mothers who believed they had
caused the jaundice after delivery discussed their diabetes, current illnesses
and medications, or, most commonly, breastfeeding. Several Latina mothers
shared their belief that maternal emotions transmitted to the infant during
pregnancy or through breastfeeding can cause jaundice. The term bilis means anger in Spanish. This meaning and a lack of understanding
about causes of jaundice accentuated their perceptions, as seen in the following
example:
Bilirubin, they are like bilis when
one gets mad. I felt that when I was pregnant and had so much stress, that's
what caused it. Also, I was scared in the hospital. I thought that was affecting
my milk and making him worse.
When asked if she still felt that way, she responded: "Yes, because
they haven't told me very well what happened."
Fewer mothers explained that jaundice was normal or part of giving birth,
attributing it to labor, bruising during delivery, or an adjustment to the
new environment. A few commented simply that "babies are born with jaundice."
Finally, 3 mothers assumed initially that hepatitis had caused neonatal jaundice.
Reactions to Jaundice Management
Mothers expressed strong emotional reactions toward jaundice treatment
protocols and the resulting mother-infant separation. Most mothers indicated
that the blood testing process was difficult to watch and painful for mother
and child. They noted the frequency of blood drawing and lack of success with
the first attempt. Mothers used "screamed" or "suffered" to describe reactions
of their neonates, and "poked," "bruised," "tormented," or "tortured" to describe
the actions of medical staff.
As bilirubin levels increased and higher levels of intervention were
needed, mothers' concerns increased. Mothers reported that professionals frequently
referred to bilirubin levels when assessing whether jaundice was improving.
Many recounted being told that high levels cause brain damage. This emphasis
on the height of bilirubin levels worried them, and they recalled avidly observing
these numbers. Some mothers had been given specific levels at which brain
damage may occur, but most had not and were left to their own thoughts about
how close bilirubin levels were to causing harm to their infants.
Twenty-three newborns underwent phototherapy. Their mothers vividly
recalled their infants crying during treatment and feeling unable to comfort
them. In addition, mothers worried that infants would overheat or become blind,
and that the lights would be ineffective in lowering bilirubin levels. They
reported lack of sleep because of their perceived need to monitor closely
the therapy and eye patch. Mothers whose infants received home phototherapy
expressed mixed reactions; some preferred being at home and not separated
from their neonates, whereas other mothers felt it put more pressure on them
to watch their infants carefully.
Almost all mothers discussed their distress and guilt about separation
from their infants during blood testing or phototherapy, and how this separation
within the first few weeks lessened their ability to bond with, touch, or
breastfeed their neonates. These feelings were most strongly expressed by
mothers who were discharged from the maternity ward without their child and
mothers whose neonates returned for hospitalization. Several mothers asserted
themselves to minimize the impact of separation. One negotiated phototherapy
at home rather than in the hospital, and another negotiated an extended maternity
ward stay.
Responses to Yellow Skin
Mothers commented that the yellow skin at jaundice recognition was alarming
and raised concerns about the color's significance and its potential effects.
Several said the yellow eyes caused them to worry about their infant's vision.
Sixty percent of mothers reported that their concerns about jaundice dissipated
as their infants' yellow color faded within 2 weeks. Mothers whose infants
continued to have yellow skin, however, described how persistence of the color
created further worries that bilirubin levels had increased and would require
hospitalization, that jaundice would last a long time, and/or that their infants
were at risk for future diseases. These concerns were accentuated because
some of these mothers had heard that jaundice typically lasts only 10 days
or had experienced jaundice differently with a previous child.
These mothers handled their concerns in several ways. They admitted
to watching their infant's skin color closely and frequently pressed down
on their infant's skin to look for the yellow color as they had seen physicians
do. A number of mothers, regardless of whether the infant was still visibly
yellow, reported asking their physicians for reassurance about the skin color
through telephone calls or additional appointments.
Maternal Perceptions of Jaundice as Serious
Twenty-seven mothers in this study perceived neonatal jaundice to be
a serious condition and described the following 5 important factors that had
an impact on these perceptions: (1) unexpectedness of the yellow skin; (2)
lack of knowledge and understanding about jaundice; (3) severity of the course
and management; (4) concerns about the effects of jaundice on their neonate,
especially brain damage; and (5) a prolonged duration of the yellow skin.
Mothers stated that if treatment for jaundice had been completed before the
nursery discharge, their perceptions of jaundice seriousness would have been
lessened (Table 3).
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Table 3. Contributing Factors to Maternal Perceptions of Jaundice as
a Serious Condition
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Of the 20 mothers who never perceived jaundice as a serious condition,
10 explained that despite the yellow skin, their neonates breastfed well,
appeared healthy, and required no medication. Five of their infants had breast
milk jaundice, whereas the remaining 5 required blood testing only for early
jaundice. One mother recounted: "It's like a cold. With a cold you have to
take medicines and with this, no. You just need to be under the sun. I thought
she might have fever or diarrhea, but nothing."
As a result of this healthy appearance, several of these mothers expressed
concerns about when to seek medical care for jaundice.
The remaining 10 mothers who did not believe jaundice to be serious
expressed having promptly received information and reassurance about jaundice.
Almost all of their infants experienced minimal interventions, with bilirubin
levels of less than 15 mg/dL (<257 µmol/L). Eight of the 14 mothers
with prior experiences with jaundice shared this view. One mother, whose neonate
had mild hemolytic jaundice, stated: "This second pregnancy I read about what
causes yellow jaundice. When the nurse told me [that the second infant had
jaundice], I was more clear. I knew it wasn't serious."
The remainder of women with previous jaundiced infants experienced more
intense levels of interventions this time and now perceived the condition
to be serious. They stressed being aware of the potential consequences of
jaundice.
Maternal Perceptions of Their Infants at Interview Time
At the interview, 33 mothers described their infants as currently healthy,
with no further worries about jaundice. They were reassured by the passage
of time, their infants' normal skin color, and physicians' assurances that
their infant was healthy. They then perceived neonatal jaundice to be a normal
event.
Fourteen mothers expressed concerns that jaundice may return and/or
that jaundice management may cause long-term effects on their infants. Eight
of these mothers spoke only Spanish, with 3 of them having previously experienced
jaundice. The 8 mothers described a language barrier that contributed to these
perceptions and their lack of understanding about jaundice. The remaining
6 experienced frequent and prolonged interventions. One mother, whose infant
had phototherapy in the nursery, home, and hospital ward stated:
I am concerned about aftereffects. Will it affect him in another
way? Maybe it will stunt his growth. I asked my husband, do you think jaundice
can come back? Even though he is cured and is 2 months. If he doesn't get
enough fluids, can it return?
Several women questioned why blood monitoring had been stopped despite
persistence of the yellow skin. They recalled their discomfort at follow-up
visits when physicians assessed jaundice by "just looking" at the infant. One
mother stated:
My doctor reassured me that he's fine. What would've really reassured
me is if they would've taken a final blood test. I didn't want him to go through
it because it's painful. . . . Do you want pain or is he okay?"
INFORMATION AS A KEY FACTOR IN MATERNAL CONCERNS AND PERCEPTIONS
All mothers discussed how they sought information about jaundice from
professionals, family, and friends, with medical staff being the most respected
source. Most mothers noted that medical professionals had told them that "jaundice
was normal and don't worry." Some viewed reassurance of normalcy as helpful,
but many still worried as their infants underwent further treatment. One mother,
whose neonate underwent only blood testing, described: "Of course I will worry!
It's serious when it's your baby. But they [the physicians] must have been
worried because they asked me to come back."
Women usually expressed preferences for being informed about neonatal
jaundice prenatally, although others wanted information at nursery discharge
or only during their experience. Recommendations for the best format included
verbal one-on-one interactions, small-group discussions, written pamphlets,
and/or videotapes. Mothers recommended that more detailed information be provided
about causes of jaundice, especially addressing maternal responsibilities;
management procedures; potential effects of jaundice and its treatment; duration
of the yellow skin; and what mothers can do for their infants preventively
and during the illness. Another valued source of information was women who
had previously experienced neonatal jaundice. Their shared experiences reassured
mothers and improved their understanding about jaundice.
All women who spoke Spanish exclusively commented that they did not
feel comfortable learning about jaundice in English and frequently were left
with a limited understanding, leading to the concerns and misperceptions cited
above. Some felt embarrassed asking questions of English-speaking staff because
of their scant knowledge of English and medical terms. Most mothers liked
having interpreters, but preferred direct communication with a knowledgeable
person. They worried that important information was omitted during translation.
One mother shared:
I feel bad because I am not understanding what they are doing.
I want to understand and that I don't have to speak through someone else.
I want to directly speak to her [the physician] and I want to ask my questions.
. . . I am left with doubts.
COMMENT
IMPLICATIONS FOR HEALTH CARE PROFESSIONALS
This study indicates that neonatal jaundice continues to concern mothers,
leading to distress, guilt, and perceptions that jaundice is a serious condition.
This study identified the following key factors behind maternal perceptions
of seriousness: unexpectedness and a perceived lack of understanding about
jaundice, quality of information received, levels of intervention, and the
prolonged duration of jaundice and yellow skin. Medical professionals must
be aware of the message of seriousness they send to mothers as they order
blood testing and initiate treatment, and they should weigh the risk for causing
maternal distress when determining what course of treatment to follow. These
mothers seemed to take to heart statements from physicians and worried if
the medical course deviated even slightly from what physicians predicted.
The data elicited through qualitative techniques offer valuable insights
into the range of mothers' perceptions about their jaundice experience that
should encourage health care providers to modify and redirect their approach
during diagnosis and treatment of this condition. In particular, the data
suggest that care must be directed to the mother as well as to the neonate.
Parental fears about children's health are frequently not obvious to medical
staff and lead to parental misperceptions.11
In addition, mothers' reactions to illness are frequently quite different
from those of physicians in quality and intensity.14
In our study, many mothers articulated that physicians' views of jaundice
as normal differed from their own views and did not seem consistent with physicians'
actions. Half of the Latina mothers came from countries where neonatal mortality
is higher than in the United States.31, 32
Illness in early childhood generates insecurities about infant health behavior
and unwarranted, persistent fears of recurrence.8, 9, 11, 12, 13, 14, 15, 16, 17, 33, 34, 35
Consistent with these findings, we found 14 mothers several months post partum
who still perceived that their infants would experience adverse effects and
potentially a recurrence of jaundice.
Maternal reactions may be lessened by explaining more fully to mothers
the diagnosis, prognosis, duration, and management options for jaundice and
by addressing their infants' future susceptibility to illness. Our data suggest
that mothers need information at repeated intervals, especially to uncover
and address misperceptions about jaundice. Each mother brings a different
level of knowledge, spoken language, and vulnerability to the emotional stresses
of infant health conditions. Given the frequent expressions of guilt, mothers
need to be reassured that they did not cause the disease. Kennell and Rolnick33 found maternal guilt to be a normal reaction during
a neonatal illness that often was hidden behind the question "What caused
my baby's condition?" In our study, all mothers expressed desire for additional
information about jaundice and its cause.
Physicians need to be aware that maternal perceptions of jaundice may
be exacerbated by cultural differences, language barriers, and the subtlety
of language and its meaning. In this sample of predominately Latina mothers, bilis associated with anger was blamed by some for jaundice.
This finding is consistent with other research among Latina women showing
that strong maternal emotions are seen as detrimental in pregnancy and during
breastfeeding.31, 32, 36
Cultural beliefs can lead mothers to interpret illness within their cultural
framework, especially when left without a clear and understood explanation.37, 38
STUDY LIMITATIONS AND FUTURE RESEARCH QUESTIONS
This study has valuable strengths but certain limitations. Experienced
qualitative interviewers, careful structuring of interview checklists, and
weekly analysis meetings among investigators minimized the potential for interviewer
bias and misinterpretation of data. Qualitative methods provided rich information
about maternal perceptions of their experiences with neonatal jaundice. The
modest sample size, however, and our mainly Latina sample limit the ability
to fully generalize findings to other ethnic groups. Nevertheless, the data
generate important issues for future research.
First, mothers in our study experienced distress regarding the effects
of jaundice and its management on their infants. What are the implications
of these concerns on the long-term mother-child relationship and on reactions
to future infant illnesses? Second, interactions with medical professionals
and mothers with personal experience with jaundice were important mediators
in mothers' reactions. For medical staff interacting with mothers, what are
the best methods to explain jaundice and address perceptions about this condition,
and can these methods be applied to other neonatal conditions? Can mothers
with previous experience with jaundice facilitate communication to mothers
currently experiencing jaundice? How does an interpreter working with a non–Spanish-speaking
health care provider affect maternal perceptions, compared with a Spanish-speaking
provider?
In conclusion, it is clear that strong misconceptions and concerns continue
to be a problem for these mothers experiencing neonatal jaundice. Practitioners
need to address these perceptions with mothers, and further research is needed
to more fully explore and document these effects.
AUTHOR INFORMATION
Accepted for publication August 3, 2001.
The study was funded in part by a grant from the Campus Research Board
at the University of Illinois at Chicago.
Presented in part at the 126th annual meeting of the American Public
Health Association, Washington, DC, November 16, 1998; and the 39th annual
meeting of the Pediatric Academic Societies, San Francisco, Calif, May 2,
1999.
We would like to thank the 47 women who participated in the study for
their time and for teaching us about the impact of neonatal jaundice on mothers.
In addition, we thank Isabel Martinez, MPH, for her assistance in scheduling
and conducting interviews, Peter Donoghue for his editorial assistance, and
Modena Wilson, MD, MPH, for her careful review and comments on the manuscript.
What This Study Adds
Previously published literature has demonstrated that parental experiences
with medical conditions in the neonatal period cause parental distress and
insecurity about infant health and can have lasting effects on the mother-child
relationship. It is important for health care professionals to understand
why parents react in this manner and to identify the current range and extent
of mothers' beliefs and reactions regarding a common pediatric condition,
neonatal jaundice.
This qualitative study highlights that neonatal jaundice continues to
concern mothers, leading to distress, guilt, and perceptions that jaundice
is a serious condition. This study identified the following key factors behind
maternal perceptions of seriousness: unexpectedness of jaundice; a lack of
understanding and knowledge about jaundice, often due to cultural differences
and language barriers between medical staff and mothers; levels of intervention;
and the prolonged duration of jaundice and yellow skin. Medical professionals
must be aware of the message of seriousness they send to mothers as they order
blood testing and initiate treatment for neonatal jaundice, and weigh the
risk for causing maternal distress when determining what treatment course
to follow.
From the Department of Pediatrics, College of Medicine (Dr Hannon),
and the School of Public Health (Dr Scrimshaw), University of Illinois at
Chicago; and the School of Public Health, Ohio State University, Columbus
(Dr Willis).
Corresponding author and reprints: Patricia R. Hannon, MD, Department
of Pediatrics, Mail Code 856, University of Illinois at Chicago, 840 S Wood
St, Chicago, IL 60612 (e-mail: phannon{at}uic.edu).
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