405872
HPQXXX10.1177/1359105311405872Hungerbuehler et al.Journal of Health Psychology
Article
Posttraumatic growth in mothers and fathers of children with severe illnesses
Journal of Health Psychology 16(8) 1259–1267 © The Author(s) 2011 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1359105311405872 hpq.sagepub.com
Ines Hungerbuehler1, Margarete E Vollrath2, Markus A Landolt1,3
Abstract Posttraumatic growth (PTG) can occur after various types of trauma but has not been studied prospectively in parents of children with chronic diseases. In this study, PTG was assessed in 126 parents of 67 children with type 1 diabetes or cancer three years after diagnosis. Most parents (62.7%) reported at least a moderate degree of PTG. Quality of family relationships, parental psychological distress and child medical characteristics assessed one month after diagnosis, and parents’ gender, explained 34 percent of PTG variance. The findings confirm that a severe disease of a child can lead to personal growth in the child’s parents.
Keywords chronic illness, chronic disease, parents, posttraumatic growth
Introduction Exposure to stressful and traumatic events can have severe psychological consequences. However, there is a growing body of evidence of positive psychological changes as a result of people’s struggle with such events (Joseph and Linley, 2008). This phenomenon has been described in individuals traumatized after disaster, war or other forms of adversity, as well as in bereaved parents (Engelkemeyer and Marwit, 2008), parents of critically ill children (Colville and Cream, 2009) or parents of children with a serious chronic disease, such as cancer (Barakat et al., 2006). The positive changes can evolve in the absence of posttraumatic stress or they can coexist beside or in spite of it (Folkman, 2008; Zoellner et al., 2008). They do not only imply recovery after a trauma but also individual
development in the sense of personal growth (Zoellner and Maercker, 2006). The research in this area has usually conceptualized the growth processes based on the work of Tedeschi and Calhoun (1996) who introduced the term posttraumatic growth (PTG). According to their 1University
Children’s Hospital Zurich, Zurich, Switzerland of Mental Health, Norwegian Institute of Public Health, Oslo, Norway 3Children’s Research Center, University Children’s Hospital Zurich, Zurich, Switzerland 2Division
Corresponding author: Dr. Markus A Landolt, Department of Psychosomatics and Psychiatry, University Children’s Hospital Zurich, Steinwiesstrasse 75, CH-8032 Zurich, Switzerland. Email:
[email protected].
1260 theory, PTG is a multidimensional concept that is manifested in various ways, including a general sense of increased personal strength, the identification of new possibilities, more meaningful relationships with others, spiritual changes and an increased appreciation for life. Importantly, whereas related concepts such as resilience, hardiness, optimism and sense of coherence, describe certain personal characteristics that allow people to manage adversity well, PTG refers to change that goes beyond an ability to resist and avoid being damaged by highly stressful circumstances (Tedeschi and Calhoun, 2004). As shown in Jim and Jacobsen’s (2008) theoretical model, the degree to which people report PTG relates to individual (e.g. demographic characteristics), environmental (e.g. social support) and event-related (e.g. medical characteristics or perceived stress) factors. Previous studies showed that women tend to report greater PTG compared to men (e.g., Swickert and Hittner, 2009; Weiss, 2002). In addition, several individual factors, such as dispositional optimism (e.g. Bostock et al., 2009) or specific coping strategies (Linley and Joseph, 2004), were found to be associated with PTG. Moreover, social support was found to be a significant predictor of PTG (Bozo et al., 2009; Leung et al., 2010; Thornton and Perez, 2006). Accordingly, support from family was found to be positively associated with PTG (Schroevers et al., 2010). Studies that examined the effect of disease severity in women with breast cancer found a positive relation with PTG (e.g. Manne et al., 2004; Tomich and Helgeson, 2004). Findings on the association between perceived posttraumatic stress and PTG are inconsistent. While some researchers reported that people with a higher posttraumatic stress level report greater PTG (e.g. Jaarsma et al., 2006), others found an inverse relationship (e.g. Ho et al., 2004) or a curvilinear relation between posttraumatic distress and PTG (e.g. Kleim and Ehlers, 2009). Still others found no relation at all (e.g. Widows et al., 2005). However, because PTG is by definition the result of a struggle with a
Journal of Health Psychology 16(8) stressful situation, stress seems necessary for PTG to occur (Tedeschi and Calhoun, 2006). Although studies on PTG in bereaved parents and parents of severely ill children are available (e.g. Barakat et al., 2006; Colville and Cream, 2009; Engelkemeyer and Marwit, 2008), this phenomenon has not yet been studied prospectively in parents of children with different chronic diseases. In this study we aimed to assess PTG in a sample of mothers and fathers three years after their child was newly diagnosed with type 1 diabetes or cancer. These two conditions were chosen because they differ in terms of degree of life-threat, severity, prognosis, course and impact on quality of life. As shown in previous studies, parents of a child with a severe chronic or life-threatening disease such as cancer or type-1 diabetes may develop posttraumatic stress disorder (PTSD) (Kazak et al., 2004; Landolt et al., 2005), which indicates the traumatic nature of such diagnoses. Furthermore, previous studies of adults with life-threatening diseases have shown that a large proportion of survivors report positive personal changes (Helgeson et al., 2006; Leung et al., 2010; Weiss, 2004). Based on these findings, we hypothesized that PTG would also be present in mothers and fathers of children with chronic or life-threatening diseases. Further, based on the prospective design of the study we wanted to examine medical, individual and family-related long-term predictors of parental PTG. We expected that a cancer diagnosis and a long initial hospital stay (medical characteristics), female gender of the parent, higher scores on a psychological distress measure and higher quality of family relations shortly after diagnosis would predict higher levels of PTG three years later.
Method Procedure Over a period of three years, 358 mothers and fathers of 179 children with newly diagnosed type 1 diabetes or cancer were approached consecutively in four different children’s hospitals
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Hungerbuehler et al. in Switzerland. Parents were asked to participate in the study within the first two weeks after diagnosis if their child met all of the following criteria: (1) new diagnosis of cancer or type 1 diabetes, (2) no other major systemic illness, (3) sufficient command of the German language, and (4) no evidence of mental retardation. Parental psychological distress and the quality of family relations were assessed by questionnaires one month after the child’s diagnosis (first assessment). Parents were required to complete the questionnaires without consulting each other. Medical characteristics and socio-demographic information were retrieved from the patient records at the same time. Three years after diagnosis (second assessment), parental PTG was assessed by questionnaires. An ethics committee approved the study, and after providing a complete description of the study to the parents, all participants signed the written informed consent form.
Participants Of 358 approached parents, 298 parents (149 mothers and 149 fathers) of 149 children (83.2%) agreed to participate in the study and provided informed written consent. The main reason given for nonparticipation was that participation was too overwhelming or time consuming. Participating and non-participating parents did not differ with regard to age (t = 1.41, p = .16), gender (χ2 = 0.51, p = .47) and diagnosis of the child (χ2 = 3.38, p = .07). Seventeen mothers and 28 fathers agreed to participate but did not return the questionnaires at the first assessment. Thus, data from 132 mothers and 121 fathers of 132 children were collected at the first assessment (one month after diagnosis). At the second assessment (three years after diagnosis), another 65 mothers and 62 fathers of 65 children (50.2%) were excluded from further analyses due to incomplete data or the child’s death (six children with cancer). Thus, the final sample comprised 67 mothers and 59 fathers of 67 children. Attrition analysis indicated no significant differences between parents who finished the study and
those who quit earlier with regard to child age (t = 1.85, p = .07), diagnosis (χ2 = 0.50, p = .82), gender of the child (χ2 = 0.16, p = .82) and their initial psychological distress (t = −0.93, p = .35). Mothers and fathers with complete data scored significantly lower on quality of family relationships compared to those who quit (t = 2.41, p = .02).
Measures PTG was assessed with an adapted version of the Posttraumatic Growth Inventory (PTGI) (Tedeschi and Calhoun, 1996), an originally 21-item self-report measure of PTG which includes the following five subscales: New Possibilities (5 items), Relating to Others (7 items), Personal Strength (4 items), Spiritual Change (2 items) and Appreciation of Life (3 items). In this study, we used the German version of the PTGI validated by Maercker and Langner (2001). We adapted the PTGI in the following two ways: First, to provide a middle answer category, we used a 5-point Likert scale (originally 6-point Likert scale) ranging from not at all (0) to extremely (4). Second, because PTG was assessed in the context of a large study on children’s adjustment to severe diseases, the questionnaire was shortened to 15 items for economic reasons (excluded items were for example ‘I am more likely to try to change things that need changing’ or ‘I established a new path for my life’). However, items were eliminated only from those subscales that contained many items (Relating to Others, New Possibilities and Personal Strength). The internal consistency of our adapted PTGI was excellent, with a Cronbach’s alpha of .91. Cronbach’s alphas for the five subscales were .75 for Relationship to Others, .65 for New Possibilities, .80 for Personal Strength, .65 for Spiritual Change and .82 for Appreciation of Life. The low consistency of the New Possibilities subscale might be a consequence of the reduction from five to two items. Although the subscale Spiritual Changes was not reduced, the items were slightly rephrased, possibly resulting in a
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lower alpha value. Considering the low alphas of these two subscales, we used the PTGI sum score as the dependent variable in our linear regression model.
middle class; and SES scores 9–12, upper class. This measure was used in previous studies and was shown to be a reliable and valid indicator of SES in Switzerland (Largo et al., 1986).
Family functioning. One month after the diagnosis, mothers and fathers were asked to rate their perceptions of family functioning. We used a German version (Schneewind et al., 1985) of the Family Relationship Index (FRI) that includes three relationship subscales of the Family Environment Scale (Moos and Moos, 1994): Cohesion, Conflict, and Expressiveness. Each scale is composed of nine items rated in a true-false format (0 or 1). The FRI is calculated as the sum of the three subscales once the Conflict subscale has been reversed. Higher scores on the FRI indicate a better quality of family relationships. Internal consistency of the FRI in our sample was α = .62. Psychological distress in mothers and fathers was also measured one month after diagnosis using the German version (Franke, 1999) of the Brief Symptom Inventory (BSI) developed by Derogatis (1993). The BSI, a 53-item selfreport scale, yields nine primary symptom dimensions and three global indices. Items are coded on a 5-point Likert scale ranging from not at all (0) to extremely (4). In the current study, the Global Severity Index (GSI) was used as a measure of maternal and paternal psychological distress. The internal consistency of this scale was α = .96. Because the GSI scores were not normally distributed in our sample, square-root transformed values were used for further analyses. Medical characteristics, such as type of diagnosis and the initial length of hospital stay, as well as socio-demographic data were retrieved from the hospital records. Socioeconomic status (SES) was calculated using a 6-point score of both paternal occupation and maternal education. The lowest SES score was two points, the highest 12 points. The three social classes were classified as follows: SES scores 2–5, lower class; SES scores 6–8,
Statistical analysis Data were analyzed using SPSS statistical software for Windows, version 15 (SPSS Inc, Chicago, IL, USA). All analyses were performed with two-sided tests with p < .05 considered as significant. Due to potential dependencies between the data collected for mothers and fathers in the same family, paired t-tests were conducted to compare the means scores of the PTGI by parent’s gender. A linear regression model was set up using the PTGI sum score as dependent variable. Predictors were selected based on the results of previous studies and significant bivariate correlations with the PTGI sum score.
Results Characteristics of the sample As shown in Table 1, the majority of mothers and fathers were married (79.1%), Swiss (88.1%), and of the middle or upper socioeconomic class (92.5%). Approximately the same number of children was diagnosed with cancer and type 1 diabetes (cancer: 64 children, type 1 diabetes: 62 children). The children’s ages ranged from 6 to 15 years (M = 10.4, SD = 2.4). In the first month after diagnosis, they spent approximately 16 days in hospital (M = 15.64, SD = 7.67). Notably, at one month, children with cancer had stayed longer in hospital than children with type 1 diabetes (t = 2.27; df = 115; p
