Journal of Pediatric Psychology, Vol. 27, No. 7, 2002, pp. 647-652
© 2002 Society of Pediatric Psychology
Brief Report: Posttraumatic Stress Disorder in Parents of Children With Newly Diagnosed Type 1 Diabetes
1 University Children's Hospital Zurich, 2 Children's Hospital St. Gallen, 3 University of Zurich, 4 Children's Hospital Aarau
All correspondence should be sent to Markus A. Landolt, University Children's Hospital, Steinwiesstrasse 75, CH-8032 Zurich, Switzerland. E-mail: mlandolt{at}kispi.unizh.ch.
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Abstract |
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Objective: To determine rates of posttraumatic stress disorder (PTSD) and symptoms in mothers and fathers of children with newly diagnosed type 1 diabetes.
Methods: Parents of 38 children with newly diagnosed type 1 diabetes were assessed with the Posttraumatic Diagnostic Scale 6 weeks after diagnosis.
Results: Twenty-four percent of the mothers and 22% of the fathers met full diagnostic criteria for current PTSD. In addition, 51% of the mothers and 41% of the fathers met criteria for partial or subclinical PTSD. Co-occurence of PTSD in couples was very low. Posttraumatic stress symptomatology did not correlate with age and gender of the child, socioeconomic status, family structure, or length of hospital stay.
Conclusions: The findings support applicability of a posttraumatic stress model for investigating the psychological impact of type 1 diabetes on parents.
Key words: chronic illness; childhood illness; diabetes mellitus; posttraumatic stress disorder; parental mental health.
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Introduction |
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Since "learning that one's child has a life-threatening disease" was included as a qualifying event for posttraumatic stress disorder (PTSD) in the Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association, 1994
), application of a trauma model for
investigating parental responses to life-threatening diseases of their
children has become more prevalent
(Stuber, Kazak, Meeske, & Barakat,
1998). Several studies have found elevated levels of posttraumatic
stress symptoms in parents of children with chronic conditions. The
epidemiological data are consistent with the trauma literature regarding
responses to traumatic exposure of moderate magnitude. Groups studied to date
include parents of pediatric cancer survivors
(Kazak et al., 1997;
Manne, Du Hamel, Gallelli, Sorgen, &
Redd, 1998; Pelcovitz et al.,
1996) and parents of children with severe burn injuries
(Fukunishi, 1998;
Rizzone, Stoddard, Murphy, & Kruger,
1994). Depending on the measures and samples used, up to 71% of
parents were found to report significant levels of traumatic stress
symptoms.
Several arguments support the hypothesis that posttraumatic stress may also
be a viable model for studying the impact of type 1 diabetes in a child on his
or her parents. First, the very onset of type 1 diabetes may be traumatizing
in some cases. Some children become acutely ill and may be hospitalized in an
intensive care unit. In these cases, parents may be confronted with the
threatened death of their child. Second, in spite of improvement in treatment
regimens, the condition is still associated with significant morbidity. For
instance, parents have to deal with threatening medical concomitants of
diabetes, such as episodes of hypoglycemia and hyperglycemia, as well as with
the possibility of severe long-term medical sequelae and shortened life
expectancy. Third, parents may be traumatized as a consequence of being
responsible for administering a treatment that involves considerable stress.
Daily injections of insulin are painful and may be experienced as a threat to
the child's physical integrity. Fourth, in previous studies, parents of
children with diabetes have been found to show signs of moderate to high
distress in the first months after diagnosis
(Chaney et al., 1997;
Thernlund et al., 1996).
In summary, diagnosis of type 1 diabetes may result in a trauma with an acute phase (diagnosis, initial treatment) followed by subsequent chronic stressors (intrusive treatment, threat of hypoglycemia and hyperglycemia, threat of medical late effects). We therefore propose that diagnosis and treatment of type 1 diabetes in a child constitute traumatic events for parents and that a posttraumatic stress model should be considered to investigate the psychological impact of this chronic disease on parents.
This pilot study was designed to examine (1) rates of and co-occurence of PTSD and PTSD symptoms in mothers and fathers of children with newly diagnosed type 1 diabetes, (2) determinants of posttraumatic stress symptoms in these mothers and fathers, and (3) differences between mothers and fathers in perceptions of life impairment due to the posttraumatic stress symptomatology.
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Method |
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Participants
Mothers and fathers of 38 children (14 girls, 24 boys) with newly diagnosed type 1 diabetes treated in four different children's hospitals in the German-speaking part of Switzerland (cantons of Zurich, Aargau, and St. Gallen) participated in the study. Parents were recruited serially over a 18-month period and asked to participate in the study within the first 2 weeks after diagnosis if their child met all of the following criteria: (1) new diagnosis of type 1 diabetes, (2) no major systemic illness other than diabetes, (3) sufficient command of the German language, and (4) no evidence of mental retardation. Parents were recruited only if their child was between 6.5 and 14 years of age at diagnosis, because the affected children took part in a separate study on psychosocial issues of diabetes. Thirty-eight (90.5%) of 42 parents whose children met the recruitment criteria agreed to participate. The main reason given by six parents for nonparticipation was that the study seemed too time consuming. Families who participated were not compensated. The mean age of the patients was 10.5 years (SD = 2.5). Thirty-one children (82%) lived with both biological parents. The sample was predominantly upper-middle-class (10.6% low, 76.3% middle, 13.1% upper). Thirty-one families (82%) were Swiss, and seven families (18%) had a Mediterranean country of origin (e.g., Italy, Spain, former Yugoslavia). Mean length of hospital stay at time of assessment was 14.2 days (SD = 7.6). Two children were initially hospitalized in a pediatric intensive care unit.
Measures
We used the Posttraumatic Diagnostic Scale (PDS;
Foa, Cashman, Jaycox, & Perry,
1997). This self-report measure of posttraumatic stress disorder
yields both a PTSD diagnosis according to DSM-IV criteria and a measure of
PTSD symptom severity. Participants are asked to rate the presence of each of
the 17 symptoms of PTSD. The scale uses a 4-point (0-3) Likert severity scale
ranging from 0 = not at all, 1 = a little bit, 2 = somewhat, to 3 = very much.
The questionnaire also includes nine items that assess impairment in different
areas of life as a reaction to the trauma, using a yes/no format. The PDS
demonstrated high internal consistency (
= .92) and good test-retest
reliability (
= .74) in its original English version
(Foa et al., 1997). Agreement
between PTSD diagnoses obtained from the PDS and the Structured Clinical
Interview for DSM-III-R SCID-PTSD modul was 82%. The sensitivity of the PDS
was .89 and its specificity was .75. The scale is widely used for screening
and assessing PTSD in clinical and research settings. This study used the
German version of the PDS (Steil &
Ehlers, 2000). The internal consistency of the translated scale
was .91 and is thus similar to the original English scale. Concurrent validity
of PDS symptom severity scores was supported by high correlations with other
measures of psychopathology: Higher PDS scores were associated with greater
depression on the Beck Depression Inventory (BDI) (r = .67), higher
State and Trait anxiety on the State-Trait Anxiety Inventory (STAI)
(r = .32), and higher scores on the Symptom Checklist SCL-90-R
(r = .68) (Steil & Ehlers,
2000). In this study, internal consistency of the PDS was .79 for
fathers and .87 for mothers. Following the DSM-IV, the diagnosis of PTSD was
made if participants reported at least one reexperiencing symptom, three
avoidance symptoms and two arousal symptoms, and impairment in at least one
life area. A symptom was rated as present if the item corresponding to the
symptom was scored 1 or greater (Foa et
al., 1997). Partial or subclinical PTSD was defined in a
conservative, restrictive fashion: persons were required to have at least one
symptom in each of the three PTSD symptom clusters
(Stein, Walker, Hazen, & Forde,
1997).
Socioeconomic status (SES) was calculated by means of a 6-point score of both paternal occupation and maternal education. The lowest SES score was 2 points, the highest 12 points. Social classes were defined as follows: SES scores 2-5, low social class; SES scores 6-8, middle social class; and SES scores 9-12, upper social class.
Procedure
The study was approved by the research ethics committees of all involved
hospitals. After obtaining informed written consent of the parents,
questionnaires were mailed to mothers and fathers 6 weeks after diagnosis of
type 1 diabetes in their child. Parents were asked to complete their
questionnaires separately and not to consult each other. Thirty-seven mothers
(97.4%) and 36 fathers (94.7%) sent back their questionnaires. Demographic and
medical variables were retrieved from the patient records.
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Results |
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Presence of PTSD and PTSD Symptoms
Posttraumatic stress symptoms of the parents are listed in Table I. Twenty-four percent of the mothers (n = 9) and 22% of the fathers (n = 8) met full DSM-IV diagnostic criteria for current PTSD. In addition, 19 mothers (51.4%) and 15 fathers (41.7%) met criteria for partial or subclinical PTSD. The analysis of co-occurence of PTSD in couples yielded an interesting result: only in two families did both parents show full PTSD at the same time. Thus, in 15 families (39% of the sample), at least one of the parents suffered from full PTSD. With regard to partial PTSD, co-occurence in couples was slightly higher: in seven families both parents suffered from partial PTSD simultaneously. In 27 families (71% of the sample), at least one of the parents showed partial PTSD.
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Because of potential dependencies between the data collected for mothers and fathers in the same family, comparison of means of symptom severity was analyzed by two-sided paired t tests. With regard to full and partial PTSD diagnosis (categorial variable), mothers and fathers were compared using chisquare tests. Table I shows that mothers reported a slightly higher number of symptoms and also more severe symptoms in all symptom clusters than fathers. These differences, however, did not reach statistical significance. There were also no differences in rates of full and partial PTSD diagnosis between mothers and fathers.
Pearson product-moment correlation coefficients were computed to examine the relationship of overall PTSD symptom severity with sociodemographic and medical variables. In both mothers and fathers, PTSD symptom severity was not associated significantly with age and gender of the child, socioeconomic status, family structure (one- vs. two-parent families), and length of hospital stay. However, there was a tendency for a longer duration of hospitalization to contribute to more posttraumatic stress symptoms in fathers (r = .34, p = .06). The mothers and fathers of the two children initially hospitalized in a pediatric intensive care unit did not meet criteria for PTSD.
Impairment in Significant Life Areas
Chi-square analyses were used to compare the proportions of mothers and
fathers that endorsed each of the nine items of the PDS assessing impairment
in various life areas (DSM-IV criterion F of PTSD diagnosis). Mothers reported
the greatest impact on overall level of functioning (67.6%), general
satisfaction with life (59.5%), and household duties (59.5%), whereas fathers
did so for leisure activities (50.0%), general satisfaction with life (47.2%),
and sexuality (42.4%). In most areas mothers reported more impairments than
fathers. These differences, however, were statistically significant only for
overall level of functioning (
2 = 6.03, df = 1;
p = .01), household duties (2 = 4.57, df =
1; p = .03), friendships (2 = 4.56, df = 1;
p = .03), and family relationships (2 = 4.04,
df = 1; p = .04).
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Discussion |
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TopAbstractIntroductionMethodResultsDiscussionReferences |
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This is to our knowledge the first study investigating posttraumatic stress symptomatology in mothers and fathers of children with newly diagnosed type 1 diabetes. A significant group of parents was found to met criteria for full or partial PTSD. As co-occurence of PTSD in couples was very low, a large proportion of families was impacted significantly. Rates of PTSD were significantly higher than those reported from large community samples (Kessler, Sonnega, Bromet, Hughes, & Nelson, 1995
; Stein et al.,
1997). Lifetime prevalence of PTSD in young adults in Germany, a
society comparable to Switzerland, was found to be 1% in males and 2.2% in
females (Perkonigg, Kessler, Storz, &
Wittchen, 2000). Thus, there is sufficient evidence to suggest
that posttraumatic stress symptoms of parents in our sample are related to
their child's illness. Notably, rates of PTSD in this study were similar to
figures reported in two previous studies of mothers of pediatric cancer
patients and mothers of pediatric burn survivors
(Pelcovitz et al., 1996;
Rizzone et al., 1994). With regard to the etiology of PTSD, this study does not allow any definite conclusions. Two possible etiologic factors have to be considered: the shock of the diagnosis (acute stressor) and traumatic aspects of medical treatment (chronic stressors). The fact that in fathers the correlation between length of hospitalization and PTSD approached significance supports the hypothesis that treatment-related stressors may be important. However, this study was not able to identify any additional sociodemographic or medical predictors of PTSD. Possibly, subjective factors such as appraisals of the events would have been better predictors of PTSD than "objective" medical variables. In addition, pretraumatic psychopathology (such as state anxiety) in parents might also be important, but it has not been assessed within this study.
No significant differences between mothers and fathers could be found with
regard to PTSD and PTSD symptom clusters. This is in line with findings by
Kazak et al. (1997) in mothers
and fathers of pediatric cancer survivors. However, this stands in contrast to
most studies of traumatized and community population samples, which have
consistently found women to have a higher risk of PTSD. One may speculate that
in parents of chronically ill children, the parental role overshadows the
gender effect.
Some limitations of this study may have influenced the reported PTSD rates.
First, the sample was small, and no matched control group was assessed.
Comparison of our PTSD rates with community samples can also be called into
question, although a German study is available for comparison that should have
eliminated cross-cultural bias (Perkonigg
et al., 2000). Second, only one self-report measure of PTSD
symptoms, the PDS, has been used. Although the reported sensitivity and
specificity of the PDS are high, different rates of PTSD might have been found
if structured clinical interviews had been used. Third, diagnosis of PTSD
requires impairment in at least one significant life area due to the trauma
reactions. Although PDS items are formulated clearly, the high rates of
impairments found in this study suggest that some of the parents may have
noted impairments that are not indicative of PTSD, but rather reflect the
simple reality of illness (such as hospitalization). This might have led to an
overestimation of the number of parents qualifying for a diagnosis. However,
the PTSD rates in this study are similar to those found in other studies of
parents of children with chronic conditions
(Pelcovitz et al., 1996;
Rizzone et al., 1994). Thus,
in spite of these limitations, we believe that there is sufficient evidence
that a significant group of parents of children with newly diagnosed diabetes
suffers from posttraumatic stress symptoms.
This study suggests several possible issues for future research activities.
Since this is the first study investigating posttraumatic stress symptoms in
parents of children with type 1 diabetes, our findings need to be replicated.
The remarkably high rates of PTSD in our sample support applicability of a
posttraumatic stress model for investigating the psychological impact of
diabetes on parents. Longitudinal studies will have to investigate the course
of posttraumatic stress reactions over time. Studies with parents of pediatric
cancer survivors suggest that posttraumatic symptoms at this early stage may
not be a transient phenomenon but may persist for many years
(Kazak et al., 1997;
Manne et al., 1998;
Pelcovitz et al., 1996).
Clinical implications can be drawn from this study. Our findings confirm
the need for careful evaluation of posttraumatic stress symptoms in mothers
and fathers after diagnosis of type 1 diabetes in their children. PTSD may
impair parental functioning. In addition, arousal symptoms are known to
directly affect the use of medical services via more frequent phone calls and
office visits for reassurance (Pelcovitz
et al., 1996). Early recognition of posttraumatic stress symptoms
would provide opportunities for interventions that have been found to be
effective in treating PTSD, thus enhancing the quality of life of families
with children with newly diagnosed type 1 diabetes. Guthrie, Sargent,
Speelman, and Parks (1990), for
example, showed that parental relaxation training had a positive effect on the
metabolic control of children with diabetes. A better understanding of the
consequences of acute and chronic stress on mothers and fathers also has
implications for the ill child's adjustment. The relationship between parental
adjustment and the adjustment of the chronically ill child is well documented
(Frank, Olmsted, & Wagner,
1991). Finally, early psychosocial interventions in symptomatic
parents may have beneficial effects not only for the psychological adjustment
of parents and patients but also for the short and long-term course of the
illness.
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Acknowledgments |
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This research was funded by grants from the Gebert-Ruef-Foundation and the Hugo and Elsa-Isler-Foundation. We thank the families that participated in this project, as well as all the physicians involved, for their contribution to this study. We also thank the anonymous reviewers for their helpful comments.
Received February 27, 2001; revision received August 22, 2001; revision received November 9, 2001; accepted November 27, 2001
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