Journal of Pediatric Psychology, Vol. 26, No. 3, 2001, pp. 155-162
© 2001 Society of Pediatric Psychology
Childhood Illness-Related Parenting Stress: The Pediatric Inventory for Parents
1 Children's Hospital of Philadelphia, 2 Georgetown University Medical Center, 3 University of Pennsylvania
All correspondence should be sent to Randi Streisand, who is now at Children's National Medical Center, Department of Psychology, 111 Michigan Avenue, NW, Washington, DC 20010. E-mail: rstreis{at}cnmc.org
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Abstract |
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Objective: To develop a measure of parenting stress related to caring for a child with an illness and to evaluate its psychometric properties with a group of parents of children with cancer.
Methods: One hundred twenty-six parents (105 mothers, 21 fathers) of children (65 boys and 61 girls, M age: 12.75 years) being followed by an oncology service were assessed using the 42-item self-report Pediatric Inventory for Parents (PIP). Internal consistency was assessed and construct validity was investigated with standardized, general self-report measures of anxiety and parenting stress.
Results: Internal consistency reliability for the PIP was
high (Cronbach 
range:.80-.96). PIP scores were significantly
correlated with a measure of state anxiety and also with parenting stress,
demonstrating construct validity. After we controlled for demographic
variables and general parenting stress, PIP scores showed strong independent
associations with state anxiety.
Conclusions: Preliminary data indicate that the PIP is a reliable and valid tool to assess parenting stress in pediatric oncology populations. As a measure of illness-related parenting stress, the PIP may be used to provide information about parent well-being that extends beyond that obtained from general measures.
Key words: pediatric oncology; parent stress; measure development.
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Introduction |
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In an article published several years ago, La Greca and Lemanek (1996
) described the need for
additional measures within pediatric psychology. Specifically, the authors
noted a lack of relevant, reliable, and valid assessment tools for ill
children or their families. Such measures were thought to be critically
important in advancing the field because they would provide further evidence
of the impact of illness on child and family well-being, as well as the need
for psychosocial intervention.
Since that time, some have attempted to develop parent-related
pediatric-specific measures (Rodrigue,
Geffken, & Streisand, 1999), such as those assessing maternal
worry (DeVet & Ireys,
1999), parental coping strategies
(Quittner et al., 1996), and
parental adaptation to raising a child with a physical disability
(Noojin & Wallander,
1996). However, a substantial body of scientific findings
continues to depend on general self-report tools primarily intended for
physically "healthy" respondents
(Radcliffe, Bennett, Kazak, Foley, &
Phillips, 1996; Rodrigue et
al., 1996). Though general measures are important, relying solely
on them is of limited value because general measures typically do not take
into account critical illness experiences (e.g., medical regimen demands,
negotiating the health care environment, and illness-specific factors such as
pain, nausea, and discomfort) likely to affect the child or family. In
addition, findings from general measures may vary if scale items are relevant
to the physical symptoms of the illness itself (e.g., frequent stomachaches,
difficulty sleeping) (Perrin, Stein, &
Drotar, 1991). This caveat is true not only for ill children; it
also applies to self-report measures filled out by the parents who care for
these youngsters. In fact, careful assessment of parent and family well-being
is thought to be critical, given that most illnesses require parental
participation or supervision in managing daily illness demands.
Thus, a more illness-specific measure of parent stress level would be
beneficial—one complementary to those that characterize parental stress
as a multidimensional, additive process incorporating parents' perception of
their children's characteristics, their own characteristics, and situational
or demographic life events (Abidin,
1990). And although the Coping Health Inventory for Parents
assesses parents' coping responses when they have a seriously ill child
(McCubbin et al., 1983), and
the Impact on Family Scale assesses the impact of a child's illness on the
entire family system (Stein &
Riessman, 1980), neither measures the extent to which parents
themselves are specifically affected by their child's health.
Several lines of evidence suggest that subtle, illness-related variations
in parents' stress symptomatology could affect both parent and child, making
this topic worthy of further exploration. First, parents caring for children
with physical limitations are at risk to experience poor mental health
outcomes (Wallander et al.,
1989). Second, stress has been shown to play a role in information
learning, processing, and recall (Gillis,
1993), which could compromise parental comprehension of, and
adherence to, the child's prescribed treatment. Third, stress on the part of
parents may be directly related to stress subsequently experienced by children
facing health threats (Johnson &
Tercyak, 1995; Melamed &
Ridley-Johnson, 1988), possibly suggesting family systemic
modeling of stress. Finally, elevated stress levels among caretakers could
negatively influence children's own medical regimen adherence behaviors
(Auslander, Thompson, Dreitzer, &
Santiago, 1997; Hanson, DeGuire, Schinkel, & Kolterman,
1995).
To the best of our knowledge, a wellstandardized, psychometrically sound
measure that assesses stress related to caring for a child with an illness
(e.g., the concept of "pediatric parenting stress") does not
exist. If available, such a measure could be used to objectively determine
which parents are stressed and help to close the gap La Greca and Lemanek
(1996) noted. This type of
measure could also identify, more precisely, the origin of the stress and the
periods of the illness cycle most highly related to distress. Further, such an
instrument might serve as an indicator of treatment outcome regarding the
effectiveness of psychological interventions to reduce stress.
In response to these needs, we attempted to develop a reliable and valid
measure to assess stress among parents of children with a critical illness.
After developing the measure, we administered it to a heterogeneous group of
parents within one illness population as a first-line investigation of its
psychometric properties. We chose childhood cancer, given the illness's
severity and varied trajectory, as well as previous documentation of the
experience of stress in parents within this population
(Kazak et al., 1997;
Radcliffe et al., 1996). The
primary purpose of this article is to report on tests of the reliability and
validity of our new measure. We anticipated that scores on the measure would
be positively related to general parenting stress, as well as parental
anxiety. We further expected that pediatric-specific parenting stress would
account for a significant proportion of the variance in parental
anxiety—a likely mental health outcome for parents of children treated
for cancer.
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Method |
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TopAbstractIntroductionMethodResultsDiscussionReferences |
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Development of the Measure
The Pediatric Inventory for Parents (PIP) was developed at the Children's Hospital of Philadelphia, within the division of oncology. Relying on the empirical literature on parenting stress, past research findings, and clinical experience, three pediatric psychologists generated a list of medically related situations and thoughts considered stressful to parents of children with an illness. Stressors were purposefully general enough so that they could apply to most parents of children with an illness and were not intended to be specific to childhood cancer.
After creating an initial pool of 50 items, we shifted focus to developing
instructions for completing the measure and devising an appropriate response
scale. Based on a transactional model of stress and coping that incorporates
cognitive appraisal of the stressor
(Lazarus & Folkman, 1984),
we determined that both the frequency of occurrence and degree of
difficulty/stress were of interest. The psychologists then reviewed the
content of initial items and broadly categorized them by type of stressor.
Similar categories were subsequently combined, resulting in four rationally
derived domains: (1) medical care, (2) communication (with child and health
care team), (3) role functioning, and (4) emotional functioning. Individual
items were then re-reviewed by the psychologists, who decided by consensus
into which domain a particular item belonged.
The next step in the development of the PIP involved a multidisciplinary team's review of all items. In addition to pediatric psychologists, the review team consisted of one nurse practitioner, four oncology social workers, and two child life specialists. Based on the team's feedback, we eliminated or revised several items. The PIP was subsequently administered to a small focus group composed of parents of children on the inpatient oncology unit in order to obtain additional feedback about the PIP's content and instruction set. Parents' verbal and written comments supported the measure's face validity.
The final version of the PIP includes 42 items grouped into four domain scales (see Table I). Parents rate each item along a 5-point Likert scale (1 = "Not at all," 5 = "Extremely") as to both the item's frequency over the last week and level of difficulty associated with it. Frequency and difficulty scores are summed separately for each of the four domain scales. These scale scores are then added together to form an overall total frequency score (PIP-F) and total difficulty score (PIP-D): higher scores indicate greater frequency and difficulty.
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Participants
Mothers and fathers of children and adolescents followed through the
hospital's oncology clinic were approached during an outpatient visit. Parents
of children currently undergoing treatment, as well as those off treatment,
were included in the study. Parents of children off treatment were included
because prior research findings indicate that many parents continue to
experience stress following the completion of treatment
(Kazak et al., 1997). All
English-speaking parents of children ages birth through 21 years were invited
to participate. Of the 206 parents/guardians approached, 165 gave their
consent, resulting in an 80% participation rate. Reasons for declining the
study were primarily due to lack of parent interest or inconvenience
associated with completing questionnaires. Of the 165 parents participating,
139 (84%) completed all questionnaires. In the case where both parents of the
same child completed measures (n = 13), only mothers' data were
retained for analyses. Thus, the total sample available for analysis included
126 parents (105 mothers and 21 fathers, M age = 41.3 years,
SD = 6.2). As shown in Table
II, the majority of the participants were Caucasian (86%), with
10% of African American and 4% of Hispanic or other descent.
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Target children of participants consisted of 65 boys and 61 girls (M age = 12.8 years, SD = 5.2) diagnosed with leukemia (n = 39), lymphoma (n = 21), neuroblastoma (n = 9), osteosarcoma (n = 8), Wilms' tumor (n = 7), rhabdomyosarcoma (n = 5), Ewing's sarcoma (n = 2), or another type of malignancy (n = 37). The mean time since diagnosis was 38.2 months (Md = 18 months, range of 1 month to 18 years). At the time of study, 80 children were on treatment and 46 had finished their treatment protocol. Parents noted the primary reason for the child's appointment to be routine check-up (41%), chemotherapy (34%), other procedure (14%; e.g., lumbar puncture, bone marrow aspirate, scans), or blood work (11%).
Procedures
The study was approved by the hospital's institutional review board.
Parents were approached for consent while awaiting the children's medical
appointment. All participants completed general information and demographic
questionnaires in an interview format administered by a trained research
assistant. Self-report measures were then explained to parents and research
staff monitored their completion.
Measures
State-Trait Anxiety Inventory (STAI)
(Spielberger, 1983). The
STAI is a 40-item self-report scale assessing symptoms of worry and anxiety
that are both transient (state) and stable (trait). The STAI has high internal
consistency and adequate construct and discriminative validity across diverse
samples (Novy, Nelson, Goodwin, &
Rowzee, 1993). Higher scores indicate more anxiety. Only the state
portion was administered in this study.
Parenting Stress Index-Short Form (PSI-SF)
(Abidin, 1990). The PSI-SF
is a commonly used measure of parent-child relationships and child and parent
characteristics. It contains 36 statements rated on a 5-point Likert scale.
The PSI-SF is reported to have satisfactory internal consistency and
test-retest reliability and good concurrent validity with the full version.
Additionally, the PSI-SF has been used with both children and adolescents
(Radcliffe et al., 1996;
Wolf, Fisman, Ellison, & Freeman,
1998)
Marlowe-Crowne Social Desirability Scale-Short Form
(Reynolds, 1982). This
scale is intended to assess the extent of socially desirable response
tendencies and is generally used in conjunction with other self-report
measures to control for such bias. The short form consists of 13 true/false
items representing behaviors that are either socially desirable or
undesirable. The short form has adequate validity and reliability when
compared to the standard 33-item form.
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Results |
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TopAbstractIntroductionMethodResultsDiscussionReferences |
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Demographic Characteristics
Parent and child demographic characteristics were examined in relationship to parents' PIP responses by computing correlations and t tests among these variables. PIP scores did not differ significantly based on parent gender, marital status, education, employment status, or household income. Age of the parent completing the questionnaire was significantly related to the PIP (PIP-F r = -.33, p <.01; PIP-D r = -.21, p <.05), with younger parents reporting more stress on the PIP than older parents.
In terms of child characteristics, the child's age was inversely related to the PIP-F score (r = -.18, p <.05), indicating that parents with younger children reported frequently occurring stressors. For both PIP-F and PIP-D scores, significant differences were found between children on and off treatment, with parents of children currently on treatment reporting more frequent (t [124] = 3.64, p <.001) and difficult (t [124] = 2.15, p <.05) stressful events. Parents of children diagnosed for a shorter period of time also reported more difficulty (r = -.33, p <.01).
Item Distribution
Each of the 42 items had a range of response, with no significant skew
patterns for any item. Similarly, total scores were not skewed (PIP-F skewness
=.54, standard error [SE] =.22; PIP-D skewness =.21, SE
=.22). The range of possible scores on the PIP scales is 42 to 210. Total
scores from this sample ranged from 43 to 185 (PIP-F) and 45 to 195
(PIP-D).
Reliability
Internal consistency of the PIP was examined by calculating Cronbach's
coefficient alphas for the total and four domain scale scores for both the
PIP-F and PIP-D scales. Coefficient alphas for the total scores were strong:
PIP-F =. 95, PIP-D =.96. Reliability estimates for the individual scales were
also acceptable (all 
.80; see Table
III).
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Construct Validity
Descriptive statistics for the PIP scales are reported in
Table III; correlations among
all psychological measures are given in
Table IV. As expected, there
were strong associations among PIP and state anxiety scores. Significant, yet
smaller, correlations among the PIP and PSI-SF general parenting subscales
were also found. Compared to normative samples, parents in this study had
higher scores of state anxiety (i.e., fell more than one standard deviation
above the mean; Spielberger,
1983) and lower scores on parenting stress (i.e., fell within one
standard deviation below the mean; Abidin,
1990).
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Multivariate Models of Parent Stress. Hierarchical multiple regression models were used to further assess the validity of the PIP by examining its association with parent anxiety. All models controlled for the effects of (1) demographic variables (e.g., parent and child age, parent ethnicity, parent education, and illness duration) with significant (p <.10) bivariate associations with the outcome variable, (2) general parenting stress, and (3) parent response bias. After controlling for the effects of these variables, we found that inclusion of the PIP-F score accounted for a total of 43% of the variance in parental anxiety (significant change in R2 = 18%, p <.001) (see Table V). Similarly, including the PIP-D score accounted for 45% of the model's anxiety score variance (change in R2 = 20%, p <.001).
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Discussion |
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TopAbstractIntroductionMethodResultsDiscussionReferences |
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This study provides initial psychometric data on the newly developed PIP. Results indicate the PIP is a face-valid instrument that is internally consistent. Parents from our study formed a heterogeneous sample, with the PIP being completed by parents of children both currently on and off treatment for cancer. In this setting, preliminary data suggest that the PIP demonstrates adequate construct validity. Our main hypothesis that PIP scores would remain independently associated with parental anxiety after accounting for other important constructs was confirmed as well.
Scores on the PIP were significantly related to several demographic
characteristics. Younger and non-Caucasian parents whose children had a
shorter illness duration and were currently on treatment reported more stress
as measured by the PIP. Past studies within pediatric oncology indicate that
distress in parents is high initially
(Kupst et al., 1995;
Kupst & Schulman, 1988),
with much stress decreasing over time, even without intervention. However,
parents of children considered to be cancer survivors continue to exhibit
residual stress (Kazak et al.,
1997). That the PIP differentiated between the more acute stress
of children being on treatment and the more protracted stress of off treatment
supports its validity. The association between PIP scores and parental age is
more difficult to interpret. Younger parents may have simply had less
parenting experience, or fewer available resources, and therefore felt more
stressed by their children's illness. These interpretations are only
speculative and will need to be explored in future prospective studies.
In terms of validity, consistent with Wallander and colleagues'
(1989) report of the potential
vulnerability of parents' mental health when confronted with a child's medical
condition, the PIP was significantly correlated with a general measure of
state anxiety, as well as general parenting stress. After we controlled for
demographic variables and general parenting stress, the PIP accounted for a
significant amount of the variance in parental anxiety. This suggests that
there are facets of pediatric parenting stress with strong, independent
associations with parental anxiety. For example, how parents respond during
medical procedures, while communicating with family members about their
child's illness, or in their role as caretaker may affect their overall mood
state and well-being. Or put another way, some of the stress and anxiety
parents felt is attributable to pediatric, illnesses-specific stressors. Using
a pediatric relevant assessment tool, we can better understand parents'
experiences of stress or anxiety that are related to their children's
illness.
These findings have several implications. First, research investigations
relying on general measures to describe the experience of parents within a
pediatric population may find overly general, or nonspecific, reports of
parents' stress or anxiety. Second, previously undocumented pediatric
parenting stress may exist, indicating a potentially unaddressed clinical need
within this population. Specifically, parents' report of state anxiety in this
sample was more than one standard deviation above normative data
(Spielberger, 1983),
suggesting that exploring the ability of illness-specific stressors to predict
clinical levels of anxiety or other mood variables is an important direction
for future research. Particularly striking is the fact that scores on general
parenting stress were lower than normative samples, yet within one standard
deviation (Abidin, 1990),
further indicating that reliance on general measures of parenting stress could
be misleading.
Within clinical investigations, the PIP provides information about specific
domains of the parenting experience most relevant to their children's illness.
By examining responses on the PIP, one can learn more about which situations
are particularly stressful for parents of children with different illnesses,
and that learning may guide psychological interventions. In addition, the PIP
has the potential to serve as a measure of the effectiveness of interventions
targeting parental stress or anxiety within pediatric populations. Toward this
end, this study provides a set of comparison data. After evaluating the
utility of the PIP within other illness populations, future investigations may
study a wider range of parent mental health outcomes in addition to anxiety,
as well as examine their relationship to other personality and coping
variables. Similarly, it would be interesting to include child- and
family-related variables to better delineate the relationship between
parent-child distress or anxiety (Melamed
& Ridley-Johnson, 1988;
Wachtel, Rodrigue, Geffken, Graham-Pole,
& Turner, 1994).
There are also several clinical implications for child health professionals. Within a pediatric practice, members of the health care team can quickly examine parents' responses on the PIP, targeting specific concerns or worries during appointments. Eventually, using the PIP in a clinical setting would also assist health care team members in their decision making about when to refer parents or families to a behavior specialist. For example, elevation in the communication domain could indicate that discussing the illness with the child, other family members, or health care team is a particularly stressful area of functioning for the parent. Communication related to the illness (and not just within the family) could therefore become a target of clinical intervention.
With regard to limitations of this work, we administered the PIP to a heterogeneous group of parents within one illness population only. Items on the PIP, however, were selected with the intention of being relevant in other illness groups—a hypothesis that future research can now explore. Administration of the PIP to a group of parents previously defined as experiencing stress or anxiety, as well as a non-clinic-referred group would provide additional information on the measure's validity. Similarly, although we attempted to recruit fathers as well as mothers, our data have been provided primarily by mothers. Recruitment of fathers will be an important goal of future investigations. Furthermore, sample size precluded us from conducting a factor analysis; domains of the PIP were rationally (rather than empirically) derived. Future data collection efforts within more varied illness groups should permit an examination of the factor structure of the PIP.
In summary, the PIP appears to be a promising new assessment tool for examining parents' report of stress related to caring for a child with an illness. Further use of the PIP in both clinical and research settings is encouraged. Our data suggest that the PIP provides useful information when administered in conjunction with a measure of general parenting stress. Whereas these data were collected from a pediatric oncology population, the PIP is intended for use with a wide range of children's illnesses. Future investigations should expand across other illness groups in order to evaluate the PIP's functioning. Data gathered from additional studies can also assist in the development of psychological interventions tailored for children and their families based on self-reported stressors.
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Acknowledgments |
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This research was supported by National Cancer Institute grant CA63930 (to AK). We would like to thank Lan Le, Jennifer Stern, and Nami Kim for their assistance with data collection and entry. We also thank the parents who participated in this research and the Psychosocial Services Team in the Division of Oncology at Children's Hospital of Philadelphia.
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Notes |
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Christine Eiser, PhD, Associate Editor, served as the Action Editor on this article.
Received March 17, 2000; accepted July 31, 2000
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A. F. Patenaude and M. J. Kupst Psychosocial Functioning in Pediatric Cancer J. Pediatr. Psychol., January 1, 2005; 30(1): 9 - 27. [Abstract] [Full Text] [PDF]
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D. E. Logan, J. Radcliffe, and K. Smith-Whitley Parent Factors and Adolescent Sickle Cell Disease: Associations With Patterns of Health Service Use J. Pediatr. Psychol., July 1, 2002; 27(5): 475 - 484. [Abstract] [Full Text] [PDF]
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