Abstract
In the current study, we investigated the occurrence of posttraumatic growth (PTG) among parents whose children had had stem cell transplantation (SCT) and survived. Although SCT is well established, it remains stressful and dangerous, and SCT is only performed if there is no other choice of treatment to be considered. A questionnaire batteries including the Post-Traumatic Stress Disorder (PTSD) Check List—Civilian version and the Post-Traumatic Growth Inventory were sent out to a cross-sectional national sample of parents of children who had had SCT six months or more before the study. The response rate was 66% (n = 281). The data were analyzed in relation to parents’ appraisal of the event, gender, and perceived social support. The results confirm that SCT in childhood is an event of extreme adversity for the parents. Indications of PTSD were found among an important minority of the parents. Nevertheless, a large proportion of the parents had experienced growth as a consequence of the child’s illness. Appreciation of life and personal strength were the domains with the highest scores. Moreover, a higher level of PTG was correlated with a higher level of posttraumatic stress and with an experience of the trauma as more severe. In summary, the study indicates that PTG is a relevant concept for this group of parents.
Introduction
Stem cell transplantation (SCT) in childhood is now an established treatment for a range of life-threatening diseases, of which leukemia remains the largest group. In spite of its life-saving possibilities, the treatment itself could be life-threatening and there may be lethal consequences due to the treatment. The survival rate is 60–70% but it is well documented that the treatment and its consequences could have long-term effects on the whole family (Forinder, 2004; Neitzert et al., 1998; Phipps, 2006). The treatment itself could be experienced as traumatic, and in addition, it may entail a number of negative long-term outcomes. Such late effects include a risk of developing secondary cancers related to the treatment as well as a constant feeling of uncertainty about what may happen in the future. Although the specific nature of these reactions is not well known, a number of studies indicate emotional reactions among parents, even many years after treatment (Barrera et al., 2009; Phipps et al., 2004). It has been suggested that the framework of posttraumatic stress (PTS) could contribute to an understanding of the effects of SCT. There are studies indicating that PTS disorder (PTSD) affects some of the parents (10–30%) after pediatric SCT (Manne et al., 2004; Taïeb et al., 2003). However, over recent decades, it has come to light that a traumatic experience might not only cause pathology but the struggle to psychologically process the traumatic experience might also bring about positive changes in life. Posttraumatic growth (PTG) is a concept that describes such positive changes, including a feeling of inner strength, a closer relationship with family and friends, and a greater appreciation of life. PTG could be seen as a change in a positive direction in different aspects of one’s lifeworld as a result of the encounter with a traumatic experience. The theoretical background to the concept is Janoff-Bulman’s concept of shattered assumptions (Janoff-Bulman, 1992). As the trauma shatters a person’s assumptive world, a trauma survivor experiences the need to rebuild. The idea is that the struggle to rebuild one’s lifeworld can include growth. This growth implies that the person experiences that they function on a higher level than before to the traumatic experience. It is worth noticing that people who develop PTS in response to a trauma may at the same time experience a feeling of growth, that is, PTG and PTSD could be experienced at the same time (Calhoun and Tedeschi, 2006).
Thus, the prerequisite for developing PTG is the appraisal of an event as truly traumatic (Calhoun and Tedeschi, 2006; Linley and Joseph, 2004). However, recent studies have demonstrated that PTG is an outcome that is influenced by a number of factors (Morris and Shakespeare-Finch, 2010). Social support is a well-known factor for reducing stress as it could work as a buffer and could increase behavior that promotes PTG (Linley and Joseph, 2004). Consequently, it is posited that social support is positively related to PTG (Rieck et al., 2005). However, previous studies examining the association between perceived social support and PTG are ambiguous. Some studies report an association between perceived social support and PTG (Dirik and Karanci, 2008; Rosenbach and Renneberg, 2008; Senol-Durak and Ayvasik, 2010) while other studies do not (Cieslak et al., 2009; Paul et al., 2010; Wilson and Boden, 2008).
Over the past 20 years, a number of studies have explored the concept of PTG within a broad field of traumas, for example, natural disasters, personal loss, and illness (Weiss and Berger, 2010). However, PTG among parents of children with a life-threatening disease has only rarely been investigated (Colville and Cream, 2009; Michel et al., 2010; Yonemoto et al., 2012; Zebrack et al., 2011). Moreover, research on the psychological consequences for parents in relation to pediatric SCT has almost exclusively focused on negative outcomes. The aim of the present study was to investigate different aspects of PTG among parents whose children had had SCT and survived. In addition, we investigated whether the parents’ subjective appraisal of the child’s illness and treatment, PTS symptoms (PTSS), and perceived social support were related to PTG.
Method
Participants
This study was a part of a larger project assessing the emotional impact on parents of pediatric SCT. The study was nationwide and included all the four centers in Sweden, where SCT is performed for children. We invited all the parents of children, who underwent SCT in Sweden, to participate in the study with the following inclusion criteria. At the time of the data collection, the child should be alive and not older than 18 years of age, and a minimum of six months should have passed since the SCT. In addition, parents with insufficient knowledge of the Swedish language to be able to understand the questionnaires (i.e. parents who required an interpreter when communicating with the medical staff) were not eligible for the study. A total of 220 mothers and 201 fathers were identified as eligible and were invited to participate in the study. Of those, 160 mothers and 124 fathers agreed to participate—yielding a response rate of 73% for mothers and 62% for fathers. Three mothers were excluded from the present analyses due to missing data on the main variable (PTG).
Ethical approval
Ethical approval was obtained from the local ethical committee at the Karolinska Institutet, Sweden, and the study was performed in accordance with the ethical standards of the recent version of the 1964 Declaration of Helsinki.
Data collection
The eligible parents were sent written invitations to participate in the study. The mail invitation included a letter describing the study, the questionnaire, a prepaid reply envelope, and a slip, which they could return if they decided not to participate in the study. Any individual parents, who had questions about the study or the questionnaire, were able to contact the investigators or the head physician at the clinic where their children were enrolled. A series of two reminder letters were sent (at two- and four-week intervals after the initial distribution of invitations) to those who had not returned a completed questionnaire or a slip stating that they did not want to participate at that time. The researchers telephoned some eligible parents to remind them and the calls gave us the impression that the reasons for not participating were to avoid negative emotions.
Assessments
Posttraumatic growth
The Post-Traumatic Growth Inventory (PTGI; Tedeschi and Calhoun, 1996) is an instrument for assessing positive outcomes reported by persons who have experienced traumatic events. It is frequently used and considered reliable (Morris et al., 2005). It consists of 21 items describing positive changes that occur following a specified negative event, and in the present study, negative event means the child’s illness and treatment. Each item is rated in relation to the statement ‘As a consequence of the child’s illness I have changed when it comes to …’. A six-point scale is used, with the values 0 (‘not at all’), 1 (‘to a very small extent’), 2 (‘to a small extent’), 3 (‘to a moderate extent’), 4 (‘to a large extent’), and 5 (‘to a very large extent’). The scale yields separate subscale mean scores for five factors: Relating to others, New opportunities, Personal strength, Spiritual change, and Appreciation of life. Scores range from 0 to 5, with a higher score indicating more PTG. In the present study, a score of 3 (‘to a moderate extent’) or more was considered to indicate clinically significant growth. This was in contrast to some previous studies, where a score of 1 (‘to a very small extent’) occasionally is considered as signifying growth. Our decision to make a more restrictive definition was taken after we had looked closely at other studies and realized that the definition had been dealt with differently according to culture context (Weiss and Berger, 2010). Furthermore, we chose not to use the Total score due to the large variation between the factors regarding the occurrence of growth in our sample. We considered it would be misleading to present a compiled score.
Data reported by Tedeschi and Calhoun (1996) indicates adequate test–retest reliability (.71). In our study, the instrument demonstrated good internal consistency: Relating to others (Cronbach’s α = .86), New opportunities (α = .85), Personal strength (α = .78), Spiritual change (α = .81), and Appreciation of life (α = .81).
Trauma appraisal
The potentially traumatic event in focus for the present study was the whole broad experience of the child’s illness and treatment. A general perception of the illness and the SCT treatment was assessed by asking two questions: ‘How would you describe your experience of the period of the child’s illness before the SCT-treatment?’ and ‘How would you describe your experience of the period during the SCT-treatment?’, with the four response alternatives: ‘Not very stressful’, ‘A bit stressful’, ‘Very stressful’, and ‘Extremely stressful’. The responses to the two questions were summed up to an index representing the individual’s appraisal of the strain of the illness and treatment. A higher score represents a more severely stressful experience.
Posttraumatic stress
The 17-item PTSD Check List—Civilian Version (PCL-C) was used for assessing PTS. In the present study, the instrument was focused using an addition in the items, which read as follows: ‘a stressful experience from the past, relating to your child’s illness and treatment’, instead of ‘a stressful experience from the past’. This approach is regularly used in the research on parents of children with a serious disease. The three aspects of reactions covered by the instrument, intrusion (five items), avoidance (seven items), and hyper arousal (five items), are congruent with the B, C, and D symptom categories of the diagnostic criteria of PTSD (Diagnostic and Statistical Manual of Mental Disorder (Fourth Edition), American Psychiatric Association, 1994). A total score indicating the occurrence and severity of PTSS (possible scores from 17 to 85; higher scores indicates more PTSS) was used in the present study. The PCL-C demonstrated excellent internal consistency in the present study: intrusion (α = .90), avoidance (α = .85), and hyper arousal (α = .91).
Social support
The parents’ perception of social support was assessed using a scale designed by Van Dongen-Melman et al. (1995), which was previously used for assessing the perceived social support of parents of children with cancer (Lindahl Norberg and Boman, 2007; Lindahl Norberg et al., 2006). The scale consists of eight items, five of which deal with general social relations and three relate to the child’s disease. Respondents rate the items on a four-point Likert-type scale: ‘I strongly agree’, ‘I agree’, ‘I disagree’, and ‘I strongly disagree’. Scores are obtained by dividing the total individual score by the number of nonmissing items, thus receiving a mean value within the range 1–4. A higher value reflects more satisfaction with support. Cronbach’s α value for the scale in this study was.91, indicating excellent internal consistency.
Data management and statistical analyses
Nonparametric tests were used to analyze the data. Consequently, for the analyses of associations between the PTGI factors and ordinal or scale variables, we used Spearman’s ρ correlation, while Fisher’s exact test was used for the analysis of associations between the PTGI factors and categorical variables. Mothers and fathers were analyzed separately.
Results
Descriptive data
Mean scores for the dependent and independent variables are presented in Table 1. Examining the PTGI scores, we found that Personal strength and Appreciation of life were most frequently reported by both mothers and fathers. The appraisal of trauma was assessed as a combination of the retrospective appraisal of the strain during the child’s illness before SCT (56% of mothers and 46% of fathers reporting ‘Extremely stressful’ and 39% of mothers and 46% of fathers reporting ‘Very stressful’) and during the child’s SCT (58% of mothers and 53% of fathers reporting ‘Extremely stressful’ and 34% of mothers and 37% of fathers reporting ‘Very stressful’). Also, 41% of the mothers and 36% of the fathers reported that both the period of illness and the SCT treatment had been extremely stressful. The PCL, which assessed current symptoms of PTS, revealed that 18% of mothers and 10% of fathers had scores at or above the cutoff score of 50 indicating possible PTSD associated with the child’s illness and treatment.
Descriptive data regarding the dependent and independent variables, self-report scores.
PTG: posttraumatic growth; PTS: posttraumatic stress.
aMissing data: 1 father.
bMissing data: 3 fathers.
All dependent and independent variables were analyzed for linear relationships with the time elapsed since the SCT treatment. Only one significant correlation was found, indicating that PTS scores were lower in fathers and that more time had elapsed since the SCT (r = −.27, p < .01).
Occurrence of PTG
Mothers generally reported more PTG than fathers (Table 2). Two-thirds of the fathers and more than five-sixths of the mothers reported significant development in their Appreciation of life making this the factor with the highest scores, while Spiritual change was the least reported aspect of PTG.
Occurrence of PTG, indicated as scores at or above three on the PTGI.
PTG: posttraumatic growth.
aMissing data: 1 father.
The relation between trauma appraisal and PTG
A more severe traumatic experience of illness and SCT was associated with more growth in the factors: New opportunities (mothers: r = .17, p < .05; fathers: r = .20, p < .05) and Appreciation of life (mothers: r = .27, p < .001; fathers: r = .26, p < 0.01). The factors Relating to others, Personal strength, and Spiritual change were not systematically associated with trauma appraisal.
The relation between social support and PTG
Among the mothers, better social support was associated with Relating to others (r = .26, p < .001), while for the fathers, poorer social support was associated with New opportunities (r = .19, p < .05).
The relation between PTS and PTG
For mothers, we found no associations between the current symptoms of PTS and PTG. However, a higher level of PTSS was associated with PTG for fathers in three of the factors: Relating to others (r = .21, p < .05), New opportunities (r = .29, p < .01), and Spiritual change (r = .23, p < .05).
Discussion
Our findings indicate that PTG is a relevant concept for this group of parents. In fact, only one person did not report growth on any of the five factors in the instrument. Appreciation of life and Personal strength were the factors with highest scores. Between half and four-fifths of the mothers and fathers reported growth within these areas; this is in line with other studies exploring growth among parents of ill children (Colville and Cream, 2009). Bearing in mind that the present study concerns parents whose child has survived a life-threatening condition, these two aspects of growth are expected to be particularly salient, according to the theoretical framework for the concept (Janoff-Bulman, 2006; Tedeschi and Calhoun, 1996). The experience confronts the parents with the fragility of life. Life is no longer taken for granted and therefore is more appreciated (Janoff-Bulman, 2006). Furthermore, just the thought that one’s child could get a life-threatening illness is something that provokes the thought ‘I could never manage to cope with that’ among most parents. However, in retrospect, these parents learn that they actually managed to cope with it, which may lead to the experience of increased personal strength—the awareness of previously unknown inner resources.
For the three other factors, the scores indicate a moderate (Relations to others) or low (New opportunities and Spiritual change) amount of change, particularly for fathers. Spiritual change is the factor with the lowest scores for both mothers and fathers, with only 20% reporting growth. As Sweden is an extremely secular country (Hofstede and Hofstede, 2005), this comes as no surprise. The items relating to Spiritual change have obvious religious wording that may be culturally unfamiliar to most Swedish people. In addition, the factor Spiritual change has been considered irrelevant in other cultural contexts (Calhoun and Tedeschi, 2006; Taku, 2010; Weiss and Berger, 2010).
The influence of cultural differences on the concept PTG as well as on the instrument PTGI is well recognized and documented and has been dealt with in different ways (Weiss and Berger, 2010). In the present study, we explored the five factors but chose not to use the Total score. Since there was a large variation between the factors with regard to the occurrence of growth in our sample, we considered it would be misleading to present a compiled score. This decision, supported by one of the originators (Prof. Tedeschi, personal communication), is in line with the theoretical standpoint that PTG is a multidimensional construct (Dirik and Karanci, 2008; Tedeschi and Calhoun, 1996).
SCT is generally considered a demanding treatment for the patients as well as for the parents (Phipps, 2006). However, since the subjective appraisal of the traumatic event is crucial for PTG, we asked for the parents’ appraisal of the treatment and illness. The findings confirm that pediatric SCT is a severely stressful experience for an overwhelming majority of the parents and that the period of the child’s illness before the treatment was experienced as equally trying. Thus, most parents appraised the child’s disease and SCT as traumatic, indicating that the requirement for PTG (i.e. a trauma) had been present. However, the association between experiencing a trauma and developing PTG is not absolute (Tedeschi and Calhoun, 2006). In the present study, the positive association between PTG and the appraisal of the SCT and the disease supports the opinion that the intensity of the traumatic experience influences the development of growth (Colville and Cream 2009; Morris et al., 2005; Yonemoto et al., 2012). Then again, these associations were quite weak and applied to only some of the PTG factors.
Although the parents experienced the SCT treatment as traumatic, fortunately this did not imply that they were exhibiting symptoms of traumatization at the time of assessment. Only a minority of the parents reported symptoms of PTS, which is in line with the results of similar studies (Kazak et al., 2004; Michel et al., 2010). It is also stated that remaining symptoms of PTS are not a hindrance to PTG. Conversely, there are studies showing that there is a positive association between growth and PTSS (Helgeson et al., 2004). In our study, three factors of PTGI (Relating to others, New opportunities, and Spiritual change) were associated with the remaining PTS symptoms for the fathers. Since the present study design does not allow conclusions about causality, it is not possible for us to know whether PTSS is a predictor of PTG in the fathers, or whether there may be a third factor predicting PTSS as well as PTG. Moreover, Morris and Shakespeare-Finch (2010) conclude that remaining PTSS is not a hindrance to developing growth but not a predictor either, indicating that there may not be any systematic relationship between these two factors.
Social support is generally supposed to play an important role in increasing PTG (Linley and Joseph, 2004). However, our findings were ambiguous. Our results indicate that good social support was related to mothers’ growth as regards Relations to others, while poor support increased the growth for the fathers with regard to New opportunities. Several previous studies have pointed out the complex role of social support. It might reduce distress, but also it might counteract growth, depending on the nature of the processing or rumination, which is encouraged by the environment (Janoff-Bulman, 2006; Morris and Shakespeare-Finch, 2010; Znoj, 2006). Calhoun and Tedeschi (2006) suggest that a certain kind of support will increase PTG, which Morris and Shakespeare-Finch’s (2010) study supports. In addition, cultural factors have been suggested as part of the reason for the different results. Explicitly, social support might play a more important role in developing growth in more collectivist cultures than in individualist-oriented cultures (Dirik and Karanci, 2008).
Limitations
The strength of the present study is that the sample was very homogeneous with regard to the type of trauma and the subjective appraisal of the trauma. However, there are certain limitations to the study. For example, we did not assess coping or personality factors, which are considered to play an important role in developing PTSS as well as PTG (Norlander et al., 2005; Zöellner and Maercker, 2006). Future studies are needed to analyze this relationship. Moreover, future studies could explore in further detail as to which aspect of the experience of severe medical conditions contributes to PTG and whether there are factors that promote or hinder this. In the future, it would also be important to investigate the effect of interventions, aiming to improve the development of PTG among parents. Since this group of parents is frequent visitors to the pediatric medical services, such a study could be usefully performed in the context of the health-care service.
Concluding remarks
We can now verify that PTG is a relevant concept applicable for this group of parents, being confronted with their child’s life-threatening illness and with a dangerous and demanding treatment. Although SCT may have negative consequences, the struggle with those consequences might also involve positive changes in the view of life. It is, however, important to underline that it is not the suffering that creates growth but coping with it.
This study was part of a larger project with the overall aim of exploring the occurrence and covariation of different aspects of psychological reactions in parents in relation to their child’s treatment with SCT. According to the present findings, it is relevant to include PTG in our future study investigating mainly distress (i.e. depression, anxiety, burn-out symptoms, and PTSS) among these parents. Moreover, we support the opinion that although PTG could be seen as a universal opportunity for human beings, there are some cultural aspects to be dealt with.
Footnotes
Acknowledgments
The authors gratefully acknowledge the parents for participating in this study.
Funding
This research was supported by the Swedish Children’s Cancer Foundation.