336 Journal of Neuroscience Nursing

Parent Perceptions of Family Social Supports

in Families With Children With Epilepsy
Kim A. Decker, Wendy R. Miller, Janice M. Buelow

ABSTRACT
Purpose and Background: When a child is diagnosed with epilepsy, not only has the child’s life been
disrupted but also the family’s sense of normalcy. Although there is considerable literature discussing
family concerns and social support issues in families with chronically ill children, a major gap lies in the
exploration of how the specifics of childhood epilepsy affect parents and family operations. The purpose
of this study was to identify psychosocial care needs of parents of children with epilepsy. Methods:
Utilizing the Family Systems Nursing theory as a framework, this correlation study examined the
relationships among social and community support, family needs, family empowerment, and family
quality of life in 29 primary caregivers of a child with epilepsy. Results: These families felt highly
supported; they had low needs and high perceptions of empowerment. There was a negative association
between social supports and the total family needs survey scale and the subscales of financial support,
help regarding explaining to others, and professional support. There was no association between family
empowerment or quality of life with parental perceptions of social support. Conclusion: In general, as
parental perceptions of family needs increased, perceptions of familial social supports decreased. Further
research is recommended to investigate varying socioeconomic status effects in families with children
with pediatric epilepsy.

Keywords: family nursing, family systems, pediatric epilepsy, social supports

E
pilepsy affects more than 300,000 school-aged
children in the United States, making it one of
the most common chronic childhood neurolog-
ical disorders (Buelow, Johnson, Perkins, Austin, &
Dunn, 2013). Consistent with Family Systems Theory
(Friedemann, 1989), the diagnosis of epilepsy affects
all family members, with one of the greatest challenges
being living with the unpredictability of what accom-
panies this disorder (Wagner, Smith, Ferguson, van
Bakergem, & Hrisko, 2010). When a child has been
diagnosed with epilepsy, the entire family’s sense of
normalcy is altered as they adjust to an unpredictable
way of life (Haley & Ratliffe, 2006). The family must
deal with feelings of uncertainty, helplessness, remorse,
conflicts in roles, strained finances, and caregiving
as they enter a new period in their life path (Haley &
Ratliffe, 2006). All family members may be at in-
creased risk for psychosocial complications, including
Questions or comments about this article may be directed to
Kim A. Decker, PhD RN CNS, at kidecker@iu.edu. She is a Clin-
ical Assistant Professor, Indiana University School of Nursing,
Bloomington, IN.
Wendy R. Miller, PhD RN CCRN, is Assistant Professor, Indiana
University School of Nursing, Bloomington, IN.
Janice M. Buelow, PhD RN FAAN, is Professor, Indiana
University School of Nursing, Indianapolis, IN.
The authors declare no conflicts of interest.
Copyright B 2016 American Association of Neuroscience Nurses
DOI: 10.1097/JNN.0000000000000243
stress, perceptions of stigmatization, mental illness,
marital difficulties, low self-esteem, and limitations of
social activities (Ellis, Upton, & Thompson, 2000).
Historically speaking, healthcare workers often under-
estimate the impact of epilepsy-caused stressors on
the individual and/or family (Devinsky, 2004), but
families with epilepsy commonly fare worse on the
entire scope of family dynamics, showing poorer parentY
child relationships, increased maternal depression, and
overall problems with family functioning (Rodenburg,
Meijer, Dekovi(, & Aldenkamp, 2005). According to
Shore, Buelow, Austin, and Johnson (2009), these
families’ need for support extends well beyond the ini-
tial diagnosis phase. Families may experience periodic
seizure crises that ebb and flow during the course of the
illness, upsetting normal development patterns and
‘‘illness coping’’ in both the child and family members
(Wagner & Smith, 2006).
The psychosocial effect of epilepsy on the family’s
everyday life depends on several factors, including
(a) epileptic severity; (b) clinical management intri-
cacy; (c) implications of what epilepsy means to the
child, family, and community setting; (d) the child’s and
family’s daily life constraints; (e) the child’s and
family’s distinctive coping capabilities; and (f) the
extent of social support and resources accessible to
manage the epilepsy (Camfield, Breau, & Camfield,
2001). Each of these factors influences the actual or
perceived adaptation that takes place when dealing
with this chronic illness (Camfield et al., 2001).

Copyright © 2016 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited.

Austin, Dunn, Johnson, and Perkins (2004) found
that significant social support needs of parents were
to discuss fears about their child’s future, to be able to
address worries about imminent seizures, and to
obtain support and reassurance from others. Interest-
ingly, in a study of children with newly diagnosed
epilepsy (Shore et al., 1998), both parents reported
similar needs and worries at 3 months after seizure
onset, but fathers’ worries had lessened at 6 months
after seizure onset, whereas the mothers’ level of
worry was more likely to stay constant. Not surpris-
ingly, increased satisfaction with family relationships
has been linked with a mother’s self-assurance about
her capability to manage her child’s seizure disorder
(Shore, Austin, & Dunn, 2004).
Although there is a considerable volume of liter-
ature discussing family concerns and social support
issues in families having a chronically ill child, a major
gap lies in the exploration of how the specifics of
childhood epilepsy affect family members and family
operations (Ellis et al., 2000). Therefore, the purpose
of this study was to identify the specific factors, in-
cluding family needs, empowerment, and quality of
life, that influence parental perceptions of social sup-
ports in families of children with epilepsy. The research
questions that guided this study were as follows: ‘‘Are
family needs (for information, family and social sup-
port, financial support, help related to explaining to
others, child care, professional support, and commu-
nity services) related to parental perceptions of social
support?’’, ‘‘Is family empowerment related to paren-
tal perceptions of social support?’’, and ‘‘Are parent
perceptions of quality of life (worries, concerns, or
limitations) related to parental perceptions of social
support?’’
Methods
This correlation study involved a secondary analysis
of data from an institutional-review-board-approved,
intervention pilot study (Buelow, 2013). Participants
were primary caregivers who belonged to an Epilepsy
Foundation affiliate in a major Midwestern city re-
gion and had a child with epilepsy (mean child age =
12.9 years, SD = 3.0 years). The sample of partic-
ipant caregivers consisted of 31 mothers who had a
mean age of 46.3 years (SD = 7.0 years). Of the
caregivers, 71% were married, and 41.9% had a
comfortable income.
Instruments
The study variables were social and community sup-
port, family needs, family empowerment, and family
quality of life. Data were obtained through a tele-
phone interview with the research assistant using the
Social Support Index, Family Needs Survey, Family
Copyright © 2016 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited.
Volume 48 & Number 6 & December 2016 337
As parental perceptions of family
needs increased, the overall
perceptions of familial social
supports decreased.
Empowerment Scale, and Child Health Questionnaire.
The Social Support Index is a 17-item, 5-point Likert
response scale (4 = strongly agree to 0 = strongly
disagree) that focuses on perceived support from
family, close friends, and community (McCubbin,
Thompson, & McCubbin, 1996). The tool has evi-
dence of criterion validity, with an internal reliability
(Cronbach’s alpha) of .82 and a published internal
consistency ranging from .64 to .82 with testYretest
reliability of .83 (McCubbin et al., 1996).
The Family Needs Survey was designed to assess
the needs of families with handicapped children (Bailey
& Simeonsson, 1990). The revised questionnaire,
used in this study, uses a three-part response scale of
‘‘no,’’ ‘‘not sure,’’ and ‘‘yes’’ to answer if partici-
pants are concerned or worried about seven factors
(Baily & Simeonsson, 1990). Bailey and Simeonsson
(1988) came to the conclusion that the best way to
ensure criterion validity was to include an open-ended
format after the 35 items. The tested reliability of
the original scale was moderate for mothers (r = .67)
and high for fathers (r = .81; Bailey & Simeonsson,
1988).
The Family Empowerment Survey is a 34-item
measure intended to evaluate parents’ self-confidence
on two dimensions: (a) their level of empowerment
and (b) the manner that empowerment is communi-
cated (Koren, DeChillo, & Friesen, 1992). The re-
sponse scale was adjusted for this study to a 5-point
scale from 1 = never to 5 = very often, with survey
items remaining the same as in the original. The factor
analysis provided support for construct validity (Koren
et al., 1992). The internal consistency (Cronbach’s
alpha) of the Family Empowerment Survey subscales
ranges from .87 to .88, with testYretest reliabilities for
the subscales ranging from .77 to .85 (Koren et al.,
1992).
Quality of life was measured using the Child Health
Questionnaire-Parent Report (Landgraf, Abetz, & Ware,
1999). This is a 20-item scale that measures parental
worry, concern, time limitations, and interruptions of
activities related to their child’s well-being, education,
and behavior conditions. The first five items correlate
338 Journal of Neuroscience Nursing

to emotions such as worry and concern and are rated
from ‘‘none at all’’ to ‘‘a lot.’’ The next five items are
concerned with time restraints, and responses are
from ‘‘yes, limited a lot’’ to ‘‘no, not limited at all.’’
The last 10 questions relate to activity limitations and
interruptions and are rated from ‘‘very often’’ to ‘‘never.’’
The tool has evidence of construct validity with a
published internal consistency median coefficient for
the eight scales of .75 (Landgraf et al., 1999).
Results
The original sample included 31 participants, but only
29 caregivers provided full data for variables used
in the current study. Table 1 displays the descriptive
statistics for the study instruments. Table 2 shows
the bivariate correlations between the study variables.
Four negative associations were found between scales
in the Family Needs Survey and the Social Support
Index suggesting that, as parental perceptions of
family needs increased, perceptions of social supports
decreased. The Social Support Index was moderately
related to family need for financial support (r = j.44),
family need for help regarding explaining to others
(r = j.39), family need for professional support (r =
j.44), and the overall family needs total score (r =
j.46). Family empowerment and quality of life
(emotional, time, and activity) were not significantly
associated with the Social Support Index.
Moderate negative relationships were also found
between some scales of the Family Needs Survey and
the Family Empowerment Survey. Decreased percep-
tions of empowerment were associated with increased
needs for family/social support (r = j.32) and an
increased need for help related to explaining to others
(r = j.38). Higher family needs total scores were
also negatively associated with family’s perception
of their quality of life (r = j.48 to j.52). Individual
Family Needs Survey scores of family need for
information, family/social support, financial support,
and child care generally supported this relationship
(r = j.32 to j.62). Individual Family Needs Survey
scores of family need for help regarding explaining
to others, professional support, or community ser-
vices did not associate as strongly (j.07 to j.30).
Discussion
This study specifically looked at parental perceptions
of social supports in families with children with epi-
lepsy in relation to family needs, family empower-
ment, and family quality of life. When looking at the
overall means, these families felt highly supported,
with low needs and high perceptions of empower-
ment, which may be because of the fact that all par-
ticipant families belonged to a support group (Buelow
et al., 2013). This study had three research questions.
Research question 1 asked if there was an associa-
tion between family needs and social supports. The
analyses revealed that, as parental perceptions of family
needs increased, the overall perceptions of familial
social supports decreased. This study did not find a
relation between family empowerment and social
supports (research question 2) or quality of life and
social supports (research question 3).
Not surprisingly, this study found that family needs
in many areas were also interrelated. For example, the
family need for child care was associated with family
need for information and financial support. The fam-
ily need for help related to explaining to others was

TABLE 1. Descriptive Statistics for All Variables Used in the Analysis (N = 29)
Measure Range M SD
Social Support Index 46.00 44.79 9.53
Family Needs total score 25.00 17.52 7.16
Family need for information 5.0 5.41 1.57
Family need for family/social support 7.0 3.83 2.39
Family need for financial support 6.0 3.07 1.83
Family need for explaining to others 5.0 2.00 1.36
Family need for child care 3.0 1.62 1.02
Family need for professional support 3.0 0.59 0.78
Family need for community services 3.0 1.00 1.00
Family empowerment 1.47 3.75 0.44
Child Health Questionnaire
Quality of lifeYemotional 70.00 30.86 21.26
Quality of lifeYtime 100.00 48.51 26.60
Quality of lifeYactivity 85.00 43.28 22.55

Copyright © 2016 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited.
 TABLE 2. Pearson Correlations for All Variables Used in the Analysis (N = 29)
Measure 1 2 3 4 5 6 7 8 9 10 11 12
1. Social Support Index V
2. Family need for information j.26 V
3. Family need for family/social support j.26 .41* V
4. Family need for financial support j.44** .38* .39* V
5. Family need for explaining to others j.39* .42* .61** .34* V
6. Family need for child care j.30 .57** .40* .59** .39* V
7. Family need for professional support j.44** .23 .57** .42* .57** .29 V
8. Family need for community services j.29 .14 .42* .41* .45** .18 .64**
9. Family needs total score j.46** .66** .82** .72** .75** .68** .70** .59**
10. Family empowerment .07 .02 j.32* .29 j.38* .06 j.14 .00 j.11
j.01 j.50** j.43* j.25 j.17 j.46** j.29 j.27 j48** j.16
Volume 48

11. Quality of lifeYemotional

&

12. Quality of lifeYtime .06 j.37* j.44** .48** j.10 j.62** j.20 j.30 j.52** j.19 .65**
13. Quality of lifeYactivity .14 j.32* j.54** j.32* j.20 j.62** j.15 j.07 j.48** j.01 .49** j.66**

*p G .05. **p G .01.

Number 6
&
December 2016

Copyright © 2016 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited.
339
340 Journal of Neuroscience Nursing
associated with family need for family/social support.
Furthermore, the family need for professional support
was related to the family need for help regarding
explaining to others, and to the need for community
services. Although this study did not find an asso-
ciation between family empowerment and social sup-
port as measured on the Social Support Index, it did
find that lower empowerment scores were associated
with an increased need for family/social support as
measured by the Family Needs scale. Lower empow-
erment scores were also associated with increased
need for help regarding explaining to others.
Although the quality of life as measured on the
Child Health Questionnaire was not associated with
the Social Support Index, the scores did show an
inverse association with the Family Needs Survey. As
the families’ perception of their total needs increased,
the perception of the families’ quality of life decreased.
The families in this study, for the most part, re-
ported a comfortable income and may not have had
many healthcare needs. Future studies are needed to
focus on families of children with epilepsy without an
adequate income. Regarding future research, increas-
ing the number and representativeness of participants
in a similar study, thus increasing statistical power and
generalizability, would be desirable. An extension of
this pilot study, branching out as multiple comparable
studies conducted in different areas of the country,
would be a recommendation. In addition, a longitu-
dinal study over time is advised.
In respect to avoiding shared method variance, the
researcher could divide the questionnaires between
the two parents in the family, but that would limit the
sample to two-parent households. The researcher could
possibly ask healthcare workers to fill out one or two of
the questionnaires, but the answers would be limited
to what they know about the family and therefore
might not be thorough. After much deliberation, we
concluded that this is a study regarding parental per-
ceptions and the parents are indeed the best reporters
available.
Limitations and Strengths
The participants were recruited from the membership
of a major Midwestern city’s Epilepsy Foundation.
The participants were fairly high functioning, had fairly
good problem-solving skills and established self-
efficacy, and had comparatively high socioeconomic
standing (Buelow et al., 2013). Common reasons for
not participating in the study were cited as transpor-
tation and child care needs (Buelow et al., 2013).
Thus, this study may not have captured the perceptions
of caregivers with greater needs. The cross-sectional
nature of the study described an association between
Copyright © 2016 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited.
the dependent and independent variables but was
not designed to establish a causal relationship. The
use of a small, convenience sample limited the power
to find correlations and limits the ability to generalize
the findings.
Caring for a child with a disability is a huge ob-
ligation for the parents, one that can far surpass that of
usual parental care (Raina et al., 2004). Nonetheless,
although this burden has been identified regarding
the family with pediatric epilepsy, little attention has
been paid to the family with epileptic children (and
those children with learning disabilities) by health-
care professionals and the research community (Buelow
et al., 2013). Persevering in the pursuit of research
regarding families with children with pediatric epi-
lepsy is a strength of this study because it has been
well documented that epilepsy affects the entire family
and not only the epileptic child (Wagner et al., 2010).
Looking at specialized assessment strategies can lead
to beneficial interventions (Leske, 2002) for children
with epilepsy and their families.
Nursing Implications
Our findings suggest that assessing and addressing
familial psychosocial care needs would benefit fami-
lies with pediatric epilepsy. This assessment should
be done at the initial diagnosis and throughout the
healthcare process because unmet needs may
negatively influence families’ perception of their
social support systems and quality of life. Families
should also be given supplementary resource infor-
mation and support related to their child’s epileptic
condition that can be utilized whenever they identify a
need outside a healthcare encounter (Shore et al.,
2009). The goal is to maximize families’ potential to
cope and deal effectively with their epileptic child’s
chronic illness.
Conclusion
This study has contributed to the literature by rein-
forcing the importance of social support for families
with children with epilepsy and attempting to study it
by using data from an existing data set. Continued
research into increasing social support for families
with children with pediatric epilepsy is advisable.
Acknowledgments
Editorial work was provided by Desiree Hensel,
PhD, RN, PCNS-BC, CNE, Associate Professor
of Nursing, Indiana University School of Nursing,
Bloomington, IN.

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