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Chronic Sorrow and Coping in Families

of Children with Epilepsy
Elizabeth F. Hobdell, Mitzie L. Grant, Ignacio Valencia, Jane Mare, Sanjeev V. Kothare,
Agustin Legido, Divya S. Khurana

Abstract: Epilepsy, a common problem in child neurology, affects the entire family. There is a potential

for such psychosocial consequences as parental chronic sorrow and alterations in coping. In this study,
67 parents completed brief questionnaires about their sorrow and coping styles. Results demonstrated
chronic sorrow as measured by the Adapted Burke Questionnaire (10.457.9). Interestingly, the total
score was not significantly different between parents of children with refractory and nonrefractory epilepsy or parents of children with comorbid or without comorbid conditions. Selection of the individual
item disbelief, however, was significantly increased in parents of children with nonrefractory epilepsy,
and selection of the item anger was significantly increased in parents of children with comorbid
conditions. Parental coping styles were similar to those reported in the normative data for the instrument used, the Coping Health Inventory for Parents (CHIP). The correlation between chronic sorrow
and coping was significant between the grief component of sorrow and Coping Pattern II of the CHIP.
Implications for practice include earlier identification of parental feelings of sorrow and coping styles,
which may contribute to a positive outcome.
Epilepsy is one of the most common problems
encountered in child neurology (Hauser, Annegers,
& Rocca, 1996). Seizure disorders have a variable age of onset and multiple etiologies. Because
epilepsy usually begins in childhood, it affects
the entire family (Hartshorn & Byers, 1994). The
course of a childs seizures, potential complications,
and long-term prognosis are often unknown. The
subsequent uncertainty resulting from these factors, coupled with the unavoidable stigma attached
to the diagnosis of epilepsy, results in anticipated
Questions or comments about this article may be directed to Elizabeth F.
Hobdell, PhD CRNP CNRN, at Elizabeth.Hobdell@tenethealth.com. She
is a nurse practitioner in child neurology at St. Christophers Hospital for
Children, Philadelphia, PA.
Mitzie L. Grant, PhD, is a neuropsychologist in child neurology at St.
Christophers Hospital for Children, Philadelphia, PA.
Ignacio Valencia, MD, is a child neurologist at St. Christophers Hospital for
Children, Philadelphia, PA.
Jane Mare is an epilepsy counselor at St. Christophers Hospital,
Philadelphia, PA.
Sanjeev V. Kothare, MD, is a child neurologist at St. Christophers Hospital,
Philadelphia, PA.
Agustin Legido, MD PhD, is chief of child neurology at St. Christophers
Hospital, Philadelphia, PA.
Divya S. Khurana, MD, is a child neurologist at St. Christophers Hospital,
Philadelphia, PA.
Copyright 2007 American Association of Neuroscience Nurses 00472606/07/3902/0076$5.00

and unanticipated psychosocial consequences for

parents and children. Some of these consequences
may be influenced by individual perceptions.
Parents perceptions of their children are often
based on images of the ideal child formulated during pregnancy. That image of an ideal child may
be lost when a child is diagnosed with epilepsy. In
part, this loss may result from the continued stigma
associated with this diagnosis (Pal, 2003). Parental
stress and feelings of sorrow and grief may result.
Contending with the diagnosis of epilepsy and acting
to overcome the inherent problems associated with
this medical condition form the basis for a parents
ability to cope with the care of a child with epilepsy.
However, psychological factors (e.g., sorrow) may
either foster or inhibit an accurate perception of an
event or situation (Kruglanski, 1989). Maladaptive
perceptions may then develop in response to a
medical condition such as epilepsy based on parents
cognitive and psychosocial resources, and these maladaptive perceptions may then impact the patients
outcome. This study was designed to compare parental coping and chronic sorrow in parents of children
with epilepsy.

Background
King (1981) described individuals as personal
systems who interact in a variety of transactions
with other individuals. Self and perception are two
facets of the personal system. In this study, self is

Vol. 39 No. 2 April 2007

represented by the parents while perception is represented by chronic sorrow and coping.
The inevitable loss of the image of an ideal child,
intensified by the diagnosis of a child with epilepsy,
may initiate a mourning process that varies in
intensity, rate, and duration (Dyson & Fewell, 1986;
Phillips, 1991; Zamerowski, 1982). Kennedy (1970)
suggests that grief lasting longer than 23 months
constitutes chronic sorrow. Chronic sorrow, which
was first described by Olshansky (1962), is the cyclical, recurring grief or sadness of parents and caregivers that occurs with different degrees of intensity
at various times during the lifetime of an individual
with a serious or chronic condition. Terms such as
chronic grief are also used to describe this phenomenon (Hummel & Eastman, 1991).
Components of chronic sorrow have been documented in parents of children with mental retardation
(Wikler, Wasow, & Hatfield, 1981), developmental
disability (Mallow & Bechtel, 1999), prematurity
(Fraley, 1996; Hummel & Eastman, 1991), Down
syndrome (Damrosch & Perry, 1989), neural tube
defects (Burke, 1989; Hobdell, 2004; Hobdell &
Deatrick, 1996), and chronic illnesses (Gravelle, 1997;
Johnsonius, 1996; Lownes & Lyne, 2000; Northington,
2000; Teel, 1993). The components have also been documented in caregivers of adults with Parkinsons disease (Hainsworth, Eakes, & Burke, 1994; Lindgren,
1996), multiple sclerosis (Hainsworth, 1995, 1996),
chronic mental disability (Hainsworth, Busch, Eakes,
& Burke, 1995), and cancer (Hainsworth et al., 1994).
Regardless of onset, patient age, or circumstances
involved, chronic sorrow is an important variable to
consider. To our knowledge the presence and incidence of chronic sorrow has not been investigated in
parents of children with epilepsy.
Concurrent with parental sorrow is the need to
cope with the care of the child with epilepsy. Coping
has been defined as dealing with and attempting to overcome difficulties (Merriam-Webster,
1986). Various components of coping may include
problem-focused strategies and cognitive- and emotionfocused solutions, including wishful thinking and
avoidance (Miller, Gordon, Daniele, & Diller, 1992).
The former are deemed more positive, while the latter are felt to be more negative or unhelpful.
Coping with the care of a child with a chronic
health condition occurs as parents must cognitively
and behaviorally manage the stress of comprehending the medical condition, adjusting to the diagnosis,
and providing appropriate care to meet the needs
of the child and family. Miller and associates (1992)
evaluated maternal stress and types of coping and
found increased distress in mothers of children with
a disability. Increased distress was associated with
emotion-focused coping strategies, while less distress
was associated with problem-focused coping strategies.

One study has specifically focused on coping in parents

of epileptic children. Austin and McDermott (1988)
correlated several components of coping with parental
attitude. They found a positive relationship among
such factors as the ability to maintain family integration, optimistic definition of a situation, social support,
self esteem, and psychological stability.
Ryan, Speechley, Levin, and Stewart (2003) noted
that in addition to seizure control, families who used
effective adaptive strategies, such as methods to
reduce the burden of illness, had a better quality of
life. Additional research has also examined adaptation, burden of care, and stigma as variables impacting stress and the ability to cope with the diagnosis
of epilepsy. For example, Strang (1990) identified the
increased burdens for individuals with epilepsy, such

Concurrent with parental sorrow is the

need to cope with the care of the
child with epilepsy.
as concomitant cognitive impairments, which impede
age-appropriate adaptation. Austin, MacLeod, Dunn,
Shen, and Perkins (2004) noted that negative attitudes
about epilepsy and perception of stigma contributed to
poor adaptation to epilepsy. Austin and associates also
suggested that family adjustment is more strongly
related to parental perception than to actual seizure
control. However, Shore, Austin, and Dunn (2004) indicated that mothers of children with epilepsy reported
more stress than mothers of children with other chronic illnesses. They concluded that adaptation is complex
for parents of children with epilepsy.
Coping with chronic sorrow is described in several studies. Damrosch and Perry (1989) noted that
mothers scored higher on the coping subscales for
expression of negative affect, self-blaming, special
feelings, and communication of feelings than fathers.
They also noted that as sorrow increased, coping behaviors increased. Hainsworth et al. (1994),
Hainsworth (1996), Eakes (1995), Hainsworth et
al. (1995), and Lindgren (1996) reported on the use
of action, cognitive, interpersonal, and emotional
coping methods in their studies. Plowey, Mossey,
Villanueva, Livingston, and Legido (2000) used the
Coping Health Inventory for Parents to assess the
effectiveness of coping behaviors in the Hispanic
population. In this study, parents of children with
epilepsy demonstrated an increased use of all coping
patterns when compared to the national sample. No
correlation between coping and chronic sorrow has
been reported in parents of children with epilepsy.
This study was designed to use brief, simple report
measures to investigate the presence of chronic

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sorrow in parents of children with epilepsy; to identify potential coping strategies that these parents
may be using; and to determine whether there is a
relationship between coping and chronic sorrow in
these parents. This sample included parents of the
following: children with refractory epilepsy; children
with well-controlled epilepsy; children with comorbid
conditions; and children without comorbid conditions.
We also analyzed the data to determine differences in
coping and chronic sorrow depending on whether the
diagnosis was made long ago or more recently (fewer
than 2.5 years).

Methods and Materials

Parents of children with epilepsy who attended
the outpatient neurology clinic at St. Christophers
Hospital for Children from March 2003 to April 2004
were invited to participate. Approval was obtained
from the hospitals institutional review board. This
study included children between 2 and 18 years of age
who were diagnosed with epilepsy (occurrence of at
least two unprovoked seizures) for at least 3 months.
Parents were asked to participate in the study during
a scheduled office visit. After obtaining informed consent, the instruments described below were administered. Whenever possible, instrument measures were
completed during the office visit; however, parents
were also permitted to complete the materials at
home and return them by mail when there were time
constraints. Information regarding the childs seizure
frequency, epilepsy syndrome, length of time since
diagnosis, medications, and presence of comorbid conditions were obtained for each subject.
The Coping Health Inventory for Parents (CHIP)
developed by McCubbin, McCubbin, Nevin, and
Cauble in 1981 was used to measure parental
coping strategies. This validated instrument is
designed to assess parents appraisal of behaviors
currently in use to manage family life when they
have a seriously ill or chronically ill child. The
CHIP is a parental self-report instrument consisting of a checklist of 45 specific behaviors. Parents
were asked to indicate the presence of a behavior
and how helpful the behavior is in their particular family situation (0 = not helpful, 1 = minimally
helpful, 2 = moderately helpful, and 3 = extremely
helpful). Parents also had the option of indicating
whether they do not cope in this manner because
they either choose not to or because it is not possible. The CHIP has three subscales that represent different positive coping patterns. The higher
the coping score, the increased use of coping.
Increased use of coping is interpreted as indicative
of increased stress. The following is a description
of each of the three coping patterns:
Coping Pattern Ipreviously identified as
Maintaining Family Integration, Cooperation,

and an Optimistic Definition of the Situationis

made up of 19 items reflecting behaviors that
focus on the family and the parents view on life
and the childs illness. The range of scores for this
pattern is 057. Items assess parental perceptions
of the importance of keeping the family together,
encouraging cooperation, involvement in their childrens lives, and fostering independence in family
members.
Coping Pattern IIidentified as Maintaining
Social Support, Self Esteem, and Psychological
Stabilityis composed of 18 items reflecting
parental efforts to have a personal sense of wellbeing by obtaining social support from others,
maintaining feelings of self-esteem, and dealing
with psychological tensions and strains. The
range of scores for this pattern is 054.
Coping Pattern IIIidentified as Understanding the Medical Situation through Communication
with Other Parents and Consultation with
Medical Staffis composed of eight coping behaviors focusing on the interface between parents
and healthcare personnel, as well as other parents in a similar situation. The range of scores
for this pattern is 024. The behaviors reflect
parental efforts to understand and master health
information needed to cope with the illness.
Parents received scores for the three coping patterns from the CHIP. Items were summed and divided by the number of items in each subscale. With
regard to reliability, McCubbin et al. (1981) previously reported Cronbachs alpha of 0.79 for Coping
Patterns I and II and 0.71 for Coping Pattern III. In
our study, a Cronbachs alpha of 0.922 was obtained
for the entire instrument.
The Adapted Burke Questionnaire (ABQ) was
used to assess the presence of chronic sorrow in the
parents of children with epilepsy recruited for this
study. The ABQ was adapted from Burkes (1989)
Chronic Sorrow Questionnaire (CSQ) and consists
of two components. This study reports only the
first component, which includes a grid of the eight
most frequently reported mood states from the
CSQ (grief, shock, anger, disbelief, sadness, hopelessness, fear, and guilt). On the ABQ, parents are
asked to indicate the intensity of these mood states
on a 4-point Likert scale (3 = most intense to 0 = not
intense). The range of scores for the ABQ is 024.
A higher score indicates increased sorrow. Content
validity has been previously determined. Previous
reliability has demonstrated a Cronbachs alpha
of 0.90 for parents, 0.89 for fathers, and 0.91 for
mothers (Hobdell, 2004). The Cronbachs alpha
for this study was 0.935 for parents. Measures of
difference and correlation were performed with
Statistical Package for the Social Sciences (SPSS,
Inc., Chicago, IL).

Vol. 39 No. 2 April 2007

Results
Informed consent was obtained from 97 parents of
children with epilepsy. Of these, 67 completed all
instruments.

Characteristics of the Children

The mean age of children with epilepsy was 9.7
years (range = 3 months to 18 years). Forty-six
percent (31) were female and 54% (36) were male.
Ninety-four percent (63) spoke English as their
primary language, while 4.5% (3) had Spanish as
their primary language. English questionnaires
were used for all parents.
The mean age of seizure onset was 4 years. Fortyfour of 67 children (66%) had nonrefractory epilepsy,
20 of 67 had refractory epilepsy (30%), and 3 of 67
(4%) had newly diagnosed epilepsy (less than 6
months since diagnosis). Forty-four children had
been diagnosed with epilepsy for 2.5 years or longer
(range = 2.618 years), and 17 children had been
diagnosed between 6 months and 2.5 years. The
three newly diagnosed subjects were not included
in inferential statistics. Refractory epilepsy was
defined as failure to control seizures with at least
two appropriate antiepileptic drugs (AEDs; Kwan &
Brodie, 2000).
The average number of previously prescribed
AEDs for the entire group was 3.1, while the number
of AEDs currently in use was 1.3. For children with
refractory epilepsy, a total of 6.2 AEDs had been
used in the past, while children with nonrefractory
epilepsy had used a mean of 1.9 AEDs. The number
of AEDs currently used was 2.2 for the children with
refractory epilepsy and 1.0 for children with nonrefractory epilepsy.
The mean number of seizures per month was 42
(range = 0200) for children with refractory epilepsy
and 1.3 (range = 030) for children with nonrefractory
seizures. The time since diagnosis was significantly
different (t = 3.02, p = .004), with the refractory epilepsy patients having a longer time since diagnosis.
Comorbid diagnoses included the presence of cerebral palsy, attention deficit hyperactivity disorder,
learning disabilities, global developmental delay,
mental retardation, and psychiatric conditions (e.g.,
depression or aggressive behaviors). Thirty-four
percent of the children (23 of 67) had no comorbid
diagnosis, while 22% had one, 39% had two, and one
patient had three comorbid diagnoses. Twenty of
44 (46%) children with comorbid diagnoses were in
the refractory epilepsy group. All patients without
comorbid diagnoses had nonrefractory epilepsy.

Chronic Sorrow Results

A moderate amount of chronic sorrow was present
in parents of children with epilepsy, as measured by

the total ABQ score, which yielded a mean score of

10.45 (the maximum score of 24 reflects the most
intense sorrow) and a standard deviation of 7.9.
The total score from the ABQ, reflecting the moodstate component of chronic sorrow, was not significantly different between parents of children with
refractory epilepsy and parents of children with
nonrefractory epilepsy (t = .90, p = ns). However,
analysis of the eight individual items of the ABQ
revealed a statistically significant difference in disbelief (reluctance to believe) between the parents of
children with refractory and nonrefractory epilepsy,
with greater disbelief reported in the group dealing
with nonrefractory epilepsy (t = 2.36, p = .022; see
Table 1).
For parents of children with and without comorbid conditions, there was no significant difference
on the total ABQ score (t = 0.76, p = ns). However, as
all children with refractory epilepsy included in this
sample also had one or more comorbid conditions,
the data were further analyzed using three groups:
1. parents of children with refractory epilepsy
(n = 20)
2. parents of children with nonrefractory epilepsy
with comorbid conditions (n = 23)
3. parents of children with nonrefractory epilepsy
only (n = 20).
There was a significant difference in feelings of disbelief between the three groups (f = 4.23, p = .019),
although there were no significant group differences
for the total ABQ score (f = 1.78, p = .17). Parents of
children with nonrefractory epilepsy and comorbid
diagnoses had greater disbelief than parents of
children with refractory epilepsy (t = 1.017, p = .18).
The parents of children with nonrefractory epilepsy,
with and without comorbid disorders, did not differ
significantly from each other. The data also revealed
a difference that approached clinical significance
between the groups with regard to feelings of
anger (f = 3.037, p = .056), with parents of children
with nonrefractory epilepsy and comorbid diagnoses
reporting much greater anger than parents of children with epilepsy only (t = .89, p = .057). The parents
of children with comorbid diagnoses (whether with
refractory or nonrefractory epilepsy) did not differ
significantly from each other.
Results of an analysis of variance did not reveal
any significant differences in the ABQ variables as
a result of time since diagnosis (<2.5 years versus
>2.5 years). In addition, correlational analyses did
not reveal any significant relationship between age
at time of diagnosis and the ABQ variables.
In analyzing the entire sample of parents of children
with epilepsy, there was a significant positive correlation between the total ABQ score (used to measure
chronic sorrow) and one of the three parental coping

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Table 1. Mean Scores and Standard Deviations for Refractory and Nonrefractory Epilepsy and
Comorbid and Noncomorbid Conditions
Epilepsy

Conditions

Feelings
Grief

Refractory
M(SD)
1.15 (1.2)

Nonrefractory
M(SD)
1.45 (1.2)

Comorbid
M(SD)
1.36 (1.2)

Noncomorbid
M(SD)
1.20 (1.2)

Disbelief

0.65 (0.99)

1.35 (1.3)*

1.14 (1.3)

1.05 (1.15)

Anger

1.10 (1.07)

1.28 (1.2)

1.36 (1.2)*

0.75 (1.02)

*p < .05.

patterns of the CHIP, namely, the one identified as

Coping Pattern II: Maintaining Social Support, SelfEsteem, and Psychological Stability (Coping Pattern
I: r = .19, p = .09; Coping Pattern II: r = .24, p = .04; and
Coping Pattern III: r = .08, p = .5). Of the eight ABQ
items, grief (r = .28, p = .03) was most highly correlated
with this coping pattern in the total sample. Further
analysis comparing parents of children with and without comorbid diagnoses revealed a similar correlation
between Coping Pattern II and grief (r = .35, p = .02) in
parents of children with comorbid diagnoses.

Coping Results
The means and standard deviations for the three
different coping patterns of the CHIP completed by
the parents in this study were as follows: Coping
I, 37.4 9.7; Coping II, 34.96 9.95; Coping III,
19.9 5.8. These values are very similar to the normative data obtained from parents of other chronically ill children (McCubbin et al., 1981). Statistical
analysis did not reveal any significant differences
in coping patterns between parents of children with
or without refractory epilepsy or parents of children with or without comorbid diagnoses, nor was
there a significant difference based upon length of
time since diagnosis (diagnosed <2.5 years [n = 17]
or >2.5 years [n = 44]).

Discussion
In this study, a moderate degree of chronic sorrow
was identified in parents of children diagnosed
with epilepsy for 1 year or more. Interestingly,
the severity of epilepsy did not significantly alter
feelings of chronic sorrow: results were similar in
parents of children with refractory epilepsy and
parents of children with fairly well controlled, nonrefractory seizures. It is noted that the total scores
on the ABQ test measure obtained in our sample of
parents of children with epilepsy were higher than
those reported in a previous study of parents of
children with congenital neural tube defects, where
the mean score reported by fathers was 4.69 and
by mothers was 7.07 (Hobdell, 2004). Reported feelings of chronic sorrow were very similar when we
compared parents of children who were diagnosed

fairly recently (< 2.5 years) to parents of children

who had been diagnosed for much longer periods
of time (2.518 years since seizure onset). There
was no difference in parental sorrow based upon
the childs age at the time of diagnosis. Our results
would imply, therefore, that the intensity of chronic
sorrow is not dependent on disease severity. We
speculate it may depend on the mere presence of
the disorder itself.
In terms of chronic sorrow, the parents in our study
reported similar feelings of sadness, grief, helplessness, guilt, fear, and shock. Interestingly, there was
a significant difference in feelings of disbelief, with
parents of children with well-controlled seizures who
also had concomitant or comorbid disorders reporting much stronger feelings of disbelief than parents
of children with intractable seizures who also had
additional concomitant disorders. In addition, the
same group of parents reported more intense feelings of anger, particularly in contrast to parents of
children with well-controlled seizures without other
medical conditions. Parents of children with comorbid conditions did not differ significantly, regardless
of their childs degree of seizure control. The specific
reasons for increased feelings of anger and disbelief
in this particular group are unclear and could not be
attributed to individual variables, such as the age
at which the child was diagnosed nor the time since
diagnosis, because these variables did not differ significantly between the groups.
We hypothesize that the differences in components
of sorrow between our three groups of parents are
likely multifactorial and reflect continuous stress
associated with various inherent uncertainties faced
by families of individuals with epilepsy, such as the
inability to anticipate seizures, variability of seizures,
unwanted side effects of medications, and uncertain
prognosis. Our results suggest that the multifactorial
character of sorrow is particularly true for parents of
children who also have other concerns, such as learning problems, developmental delays, and emotional
or behavioral issues. These emotions are not dissimilar to those identified not only in parents of children
with severe disabilities, but also in a subgroup of
parents of children with diabetes, in which children

Vol. 39 No. 2 April 2007

appear well but have potential for life-threatening

situations (Lownes & Lyne, 2000).
The current data from the CHIP, on awareness and
use of various coping strategies and patterns among
parents of children with epilepsy, is very similar to
previously published data from parents with other
chronically ill children. In our sample, we did not
identify significant differences in coping patterns
used by parents of children with refractory epilepsy
compared to those used by parents of children with
well-controlled seizures, nor was there a difference
in parental use of these coping strategies based upon
the presence or absence of comorbid disorders or
time since diagnosis.
However, we did identify a significant relationship
between the occurrence of chronic sorrowspecifically, feelings of griefand the use of Coping Pattern
II from the CHIP. This result indicates that parents
of children with epilepsy who are experiencing more
intense grief and sorrow are more likely to report the
frequent use of a specific group of coping strategies.
These strategies include seeking and obtaining social
support from others, making attempts to deal with
psychological tensions and strains, and attempting
to maintain feelings of self-esteem. This result is
similar to that of a previous study comparing coping
patterns in families of children with cerebral palsy,
which concluded that from a theoretical perspective
coping behaviors are developed in response to stressful situations and, consequently, one would expect
parents in high-conflict families to record greater
use of coping behaviors (McCubbin et al., 1981).
We anticipated that a higher degree of chronic sorrow in parents would result in more frequent use of
coping behaviors because this correlation is perceived
to reflect an active effort to adjust and adapt to ones
situation. In our sample, the specific coping pattern
(II) indicates that at times of increased sorrow, parents
of children with comorbid diagnoses seek external
sources of support. These results are similar to those
reported by Damrosch and Perry (1989), who note an
increase in coping with an increase in sorrow. Austin
and McDermott (1988), in a study comparing coping
(as measured by the CHIP) to parental attitude, noted
that improved attitude resulted in increased use of
Coping Patterns I and II. They suggested that the
increased use of Coping Pattern II strategies reflected
a positive attitude of sharing feelings with others.
Use of coping strategies in families of children
with cystic fibrosis, also as measured by the CHIP
(McCubbin, Thompson, & McCubbin, 2001), indicated
that parental use of Coping Patterns II and III was
associated with gains in a childs height and weight
index and with improvement in the pulmonary function index. This observation leads us to hypothesize
that specific interventions to alter coping strategies
(such as Coping Pattern III) might subsequently

decrease feelings of grief and sorrow, assist with

adjustment, and thus improve parental perceptions.

Implications for Practice

Results indicate that brief, easy-to-use pen-andpaper report measures appear to be very useful
clinical screening tools. These report measures
effectively identify issues of concern in families
of children with epilepsy, including potential feelings of distress and sorrow in caregivers and their
awareness and use of various coping and adjustment strategies. The ability to quickly and easily obtain this information may help healthcare
providers identify families in need and implement
appropriate interventions, with the anticipation of
contributing to a more positive outcome for families
of children with epilepsy.

Limitations
This study was limited by the inability to evaluate coping in the Spanish-speaking population and compare
results to previous results from Plowey et al. (1999).
It also would have been helpful to differentiate mothers and fathers in the comparisons. Previous research
has demonstrated gender differences in chronic sorrow between mothers and fathers (Hobdell, 2004). A
larger sample size might have provided more information about the specific components of sorrow.

Future Research
Additional research is needed to determine whether
there is a critical time period following diagnosis in
which appropriate educational and supportive interventions may positively impact individual and family adjustment and potentially alter not only parental
perceptions about epilepsy, but also the subsequent
quality of life for children and their families.

Summary
This study identified the presence of moderately
intense feelings of chronic sorrow in parents of children with epilepsy, both nonrefractory and refractory. It is important for healthcare providers to
recognize that this emotional response may negatively impact parental, child, or family adjustment
and adaptation, as well as their ability to effectively
identify and implement coping strategies necessary
for maintaining or improving quality of life.

Acknowledgment
This study was supported by a grant from the St.
Christophers Foundation: Grant No. 139. We are
grateful to Dr. M. Heverly for assistance with statistical analyses.

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