In our work we are specifically interested in two developmental periods: the period of pubescence (approximately 11-14/15 years) and the period of adolescence (approximately up to 20 years). Both are referred to by the common term - the period of adolescence. These periods have their own specifics: children slowly become adults, their identity is formed, they gradually detach from the family and become independent. Ill adolescents must come to terms not only with the illness itself, but also with the conditions of adolescence made more difficult by the illness.
Oncological illness also considerably affects the child's parents, raising various questions for them. A great burden lies in watching their child suffer. The initial announcement of the diagnosis always evokes shock, sadness, anxiety, and leads to the rapid development of defense mechanisms. Information about the diagnosis closes the period of uncertainty, waiting, and fear of the unknown; on the other hand, it begins a new period of treatment of a specific illness, yet bringing new uncertainty (Oppenheim, 2004). Most parents go through several stages of coping, as described by Elisabeth Kübler-Ross (in Říčan, Krejčířová, 2009), usually in the common order with varying duration of individual stages.
The relationship between parent and ill child and its connection to various psychological and physical aspects, such as social support, parental closeness and their influence e.g. on immunity, but also on coping, which is also the focus of our research, have been the subject of many studies (e.g. Decker, 2007; Punyko, et al., 2007; Varni et al. 1997; Rivère-Nicloux, 2006).
In our work we primarily focus on the openness of parent-child communication about the child's illness. We relate this to several psychological aspects. More specifically, we focus on whether and how open communication about the illness manifests in relation to anxiety, coping, and selected aspects of health-related quality of life.
Health-related quality of life is characterized by what a person experiences as a consequence of illness and the provision of healthcare (Požonská, Kollárová, Mrosková, 2004). For this, we took as our model the Varni model (Varni et al., 2002), which assesses quality of life based on the presence of problems in various physiological and psychological dimensions associated with the illness. Monaco (1999) emphasizes the importance of examining quality of life in children currently undergoing treatment; results from such assessment can help in anticipating and possibly treating difficulties associated with the illness and its treatment.
For coping, we drew on Ayers' (Ayers et al., 1996) concept of coping. Unlike the classical 2-dimensional concept of problem-focused and emotion-focused coping by Lazarus and Folkman (1984), he created a 4-dimensional model of coping based on factor analysis: active coping strategies, distraction strategies, avoidance strategies, support-seeking strategies.**
We believe that the quality and quantity of communication about the illness, its openness in terms of information about the illness, treatment, and side effects, are related to some psychological aspects of the illness. Parents consider what and how to tell their child about the illness; some may think that the less they tell the child, the better. However, this may not be the rule. Claflin and Barbarin (1991) conducted a study in which children who were told less about the illness showed the same level of distress as those who were told more. Their finding suggests that concealing information about the illness fails in the effort to mask the stressful aspects of the illness. Chesler, Paris, and Barbarin (1986) found that some parents are convinced that the less the child knows, the less it will trouble or hurt them. The basis of this so-called protective strategy is that if stressful information is withheld from the child, the child will be spared a certain uncertainty and stigma of living with cancer, and as a result there will be less distress in their life. On the other hand, if the child is not told all the information, they are not enabled to grasp the situation and use all available resources to cope with it. Here too, however, an individual approach must be taken, just as in adult oncology. Not all patients are able to absorb information concerning the illness (see Tschuschke, 2004); this applies especially to children - younger ones often do not even understand their situation, while with older ones a sensitive approach must be chosen (Blatný et al., 2008). For some, detailed information may be more burdensome; for others, it may help in terms of interpretive and cognitive coping. Children who were told more about the illness showed a greater presence of cognitive strategies than those who were told less (Claflin, Barbarin, 1991). However, this involved younger children, where the level of communication may not have been the only factor; younger age and thus the non-development of such strategies may also have played a role.
Last and Veldhuizen (1996) report that children with whom there was open communication about their diagnosis and prognosis already in the early stage of the illness showed lower levels of anxiety and depression. According to Koocher et al. (in Stern, Norman, Zevon, 1993), adolescents from unsupportive families with very little or no communication about the illness used ineffective coping strategies. They showed longer-lasting problems in adaptation (see also Sanger et al., 1991). The adolescent oncology patient must therefore cope with a dual burden - that associated with adolescence itself and also the strong stressors arising from diagnosis, treatment, and the course of the illness. Sanger et al. (in Stern, Norman, Zevon, 1993) identified this group of adolescents as being at risk for difficulties in psychosocial adjustment.
With regard to previous research findings, we formulated the following questions and the hypotheses arising from them. 1: What will be the relationship between parental openness in communication with adolescents about their illness and anxiety in adolescents? At the same time, in our hypothesis for the first question, we assume that communication that is more open toward the child and provides more information is associated with a lower level of anxiety in pubescents and adolescents. Within this question, we also checked the level of anxiety in parents of ill children and compared it with anxiety in healthy children. 2: What will be the relationship between parental openness in communication with adolescents about their illness and selected aspects of health-related quality of life? 3: What will be the relationship between parental openness in communication with adolescents about their illness and coping strategies? 4: What will be the relationship between the level of health-related quality of life and the choice of coping strategies?
METHODS, RESEARCH SAMPLE
For the purposes of the research, we created a test battery for parents and likewise for their adolescent children. Parents completed the State-Trait Anxiety Inventory for adults - STAI (Ruisel et al., 1980), the parent version of the PedsQL 3.0 Cancer Module (Varni et al., 2002) consisting of 8 scales: pain, nausea, procedural anxiety, treatment anxiety, worry, cognitive problems, perceived physical appearance, communication, and a questionnaire we created focused on communication about the illness. In creating it, we drew on the instrument used by Last and Veldhuizen (1996).
Children completed the Anxiety and Trait Anxiety Scale for Children - ŠAD (Mullner et al., 1983), the child version of the PedsQL 3.0 Cancer Module (Varni et al., 2002), and a questionnaire focused on coping, the CCSC-R1 (Ayers et al., 2000), consisting of 14 subscales forming 4 main coping factors: active coping strategies, divided into two subclassifications - problem-focused coping and positive cognitive reappraisal; distraction strategies; avoidance strategies; support-seeking strategies.
The research sample consisted of 19 oncology patients aged 12-18 years (mean age M = 14.55; standard deviation SD = 1.94) and 15 parents who accompanied their child during treatment. Parents and children formed pairs; parents of 4 children did not complete the questionnaire. Data collection took place at the Clinic of Pediatric Hematology and Oncology of DFNsP in Bratislava and the Clinic of Pediatric Oncology and Hematology of SZU DFNsP in Banská Bystrica in the months of February and March 2010. Data collection was conducted separately with parents and children to prevent mutual interference. The control group consisted of 33 healthy children aged 12-18 years (mean age M = 14.91; standard deviation SD = 2.31).
RESULTS
Question No. 1 For the relationship between parental openness in communication with children about the illness and anxiety in children, we found a weak correlation (r = 0.107), which has practically little significance. Our hypothesis was therefore not confirmed. The level of parent-child communication, in terms of information about the diagnosis, treatment, and possible side effects, proved to be highly open. The mean raw score was 54.03 out of a total maximum possible value of 60 points, with a standard deviation of SD = 4.09.
The average level of anxiety in children compared to sten norms fell into the 7th sten for boys and the 4th sten for girls. Parental anxiety similarly fell into the 7th sten; the relationship between parental and child anxiety showed only a mild correlation (r = 0.337, p = 0.219).
In terms of anxiety levels, pediatric oncology patients (N = 19) achieved a mean score of M = 33.53 with a standard deviation of SD = 5.45. Healthy children (N = 33) achieved a mean score of M = 32.97 with a standard deviation of SD = 5.18. Differences in anxiety levels between the two groups were not statistically significant (t(50) = 0.366, p = 0.716).
Question No. 2 In the analysis of the relationship between openness of communication and health-related quality of life in children, we did not find significant relationships. Overall, between communication and health-related quality of life in adolescents, we found only a weak, not very significant relationship. A mild negative relationship was found between communication and procedural anxiety (r = -0.372, p = 0.172); however, it should be noted that higher scoring on individual items of the PedsQL questionnaire indicates worse quality of life. A similarly mild negative relationship was also found between communication about the illness and the communication problems subscale (r = -0.368, p = 0.177).
Question No. 3 Relationships with openness in communication were analyzed for the 4 main coping dimensions in children and likewise for their individual subclassifications. The results of the first analysis are presented in Table No. 2. More significant relationships were found between openness of communication about the illness and distraction coping strategies. Although this was only a very small negative correlation, it was already on the border of a mild relationship (r = -0.296), and between openness of communication and support-seeking coping strategies, where there was a mild correlation (r = 0.474, p = 0.087).
In a more detailed analysis of individual factors and their subclassifications, we found relationships for the factors of distraction strategies, avoidance strategies, and support-seeking strategies. The results of these analyses are presented in Tables No. 3-5.
We found a mild negative correlation between openness in communication about the illness and distracting activities (r = -0.363, p = 0.202).
Between communication and the dimension of suppressing thoughts about the problem, we found a significantly clear correlation (r = 0.523, p = 0.055), which can already be practically evaluated, and a very weak negative relationship for the dimension of wishing and thinking the problem is smaller (r = -0.239).
The highest degree of relationship was found for the dimension of the support-seeking strategies factor, problem-focused support seeking (r = 0.679, p = 0.008). The correlation coefficient indicates a significant clear correlation.
Question No. 4 Between the subclassification of active coping strategies - problem-focused coping and health-related quality of life, we found a clear negative correlation (r = -0.544, p = 0.02); between the subclassification of positive reappraisal and health-related quality of life, we also found a clear negative correlation (r = -0.534, p = 0.02). Between health-related quality of life and avoidance strategies, we found a mild negative correlation (r = -0.485); between health-related quality of life and support-seeking strategies, we found a mild negative correlation (r = -0.479). Virtually no relationship was found between health-related quality of life and distraction strategies.
Within the subclassification of problem-focused coping of the active coping strategies factor, given the specifics of our research sample, such as the impossibility of directly changing one's situation, we examined the relationship between health-related quality of life and the dimension of direct problem solving. We found a very small correlation (r = -0.158). In the dimension of the same subclassification, we also found the strongest relationship with health-related quality of life, among all dimensions of individual coping factors, for the dimension of seeking understanding (r = -0.605), which in our case represents a clear relationship.
DISCUSSION
Overall, we found very few studies devoted to the relationship of communication about the illness with ill children or adolescents. Specifically, communication between parents and children about the illness in pediatric oncology patients is addressed by the aforementioned research by Claflin and Barbarin (1991), who examined the impact of openness of communication on the perception of subjectively experienced stress from the illness. They found no difference in the level of stress among children with whom communication varied. On the other hand, children who were told more about the illness also showed a greater presence of cognitive coping strategies, thereby increasing their "coping repertoire" (ibid.). Last and Veldhuizen (1996) also focused on the relationship between open communication and anxiety and depression, finding that children with whom parents communicated openly about the illness from the very beginning of diagnosis and treatment had significantly lower levels of anxiety and depression. Our work represents a kind of probe into this issue in our region. Given the composition and size of our sample, the individual statements in the discussion should be taken more as a direction for certain considerations rather than as explicit claims.
The first research question of this study addressed the relationships between open communication from parents about the diagnosis, treatment, and possible consequences and side effects, and anxiety. Based on the results of the study by Last and Veldhuizen (1996), we assumed that communication that is more open toward the child and provides more information would be associated with a lower level of anxiety in pediatric oncology patients. This assumption was not confirmed; we found only a very small correlation between anxiety and communication about the illness. We believe that one possible reason for this result may be the limited size of our sample and the broader age range. However, nowadays information about the illness may also be obtained through other means than from parents or medical staff. In both departments, in Bratislava and Banská Bystrica, patients have access to the internet and a notebook computer is available for each child. When obtaining information in this way, the human factor may be lacking - someone who could also provide possible support in coping with the difficult situation.
It turned out that the so-called protective approach (see Chesler, Paris, Barbarin, 1986), where parents do not talk to their children about the illness in an effort to protect them, is more or less outdated; the average openness of communication proved to be very high. The need for communication about the illness is also emphasized by Beale et al. (2005), although a high level of information may not be beneficial for everyone.
We also looked at the level of anxiety in parents, which proved to be higher when compared with the sample of children as a whole. When children were divided by gender, the level of anxiety was higher in boys, according to norms in the same range as parents - 7th sten; girls showed less anxiety - 5th sten. Compared with healthy children, the level of anxiety appeared more or less the same in both groups.
In the second question, we address the relationship between openness of communication about the illness and health-related quality of life in children. Here too, we did not find a significant relationship between open communication and the overall level of health-related quality of life. A mild negative correlation was found in the relationship with the dimension of procedural anxiety. This dimension concerns anxiety about painful medical procedures. This relationship, although mild, could suggest that open communication about the treatment and individual procedures allows ill adolescents to better prepare for the procedure, knowing what to prepare for and what to expect.
Another mild negative correlation was found between openness of communication and the dimension of communication problems. This dimension concerns how openly and without difficulty the ill child can talk about their illness with others, with the medical staff, and to what extent they can initiate this communication. This relationship could also suggest a certain connection; we might infer that openness in communication with the ill child helps the adolescent adapt to the illness, accept their situation, and thereby allows them to talk openly about their illness with others and actively take an interest in the course of treatment and illness - see the PedsQL questionnaire item on initiating communication with medical staff.
The relationship between openness of communication about the illness and the dimension of perceived physical appearance was on the border of a mild relationship, which is why we also mention it in this section of the paper. Based on this result, we could consider that open communication helps adolescents adapt to the illness, which subsequently helps increase subjectively perceived health-related quality of life in some of its dimensions.
In the third research question, we addressed the relationship between parental openness in communication about the illness and the use of individual coping strategies. The relationship between openness of communication and support-seeking strategies appeared to be mild; the relationship between openness of communication and distraction strategies was on the border of a mild relationship.
Support-seeking strategies consist of two dimensions: support seeking for emotion management and problem-focused support seeking. It was with the latter that we found a clear correlation with openness in communication in the more detailed analysis. This dimension involves seeking out and using other people as resources that help in finding a solution. In practice, this means seeking advice, information, or seeking direct assistance in solving the problem. Open communication expands the possibilities for coping in adolescents. If parents provide them with all the important information, the adolescent may perceive this as a signal that they can rely on them. Blount et al. (in Frank, Blount, Brown, 1996) pointed out that coping focused on seeking information about the illness was related to better adaptation to chronic illness in children.
A mild negative relationship was found between openness in communication and the dimension of distraction coping strategies - distracting activities, which represent an effort to avoid the problem through distracting stimuli in the form of some activity. Open communication could be associated with a lower need to avoid one's problem through various activities. Interestingly, however, openness in communication was also related to the dimension of the avoidance coping strategies factor - suppressing thoughts about the problem. This was a clear correlation. We relate these contradictory relationships, despite the fact that there is insufficient evidence for the existence of one of them, to the turbulence and instability that characterize the period of adolescence. Kavšek and Seiffge-Krenke (1996) also found two approaches to coping in adolescents - these were factors of avoidant and so-called approach coping. Aldridge and Roesch (2007) mention the frequent occurrence of controversial findings regarding the relationship between coping and adaptation to the illness situation.
In the fourth research question, we address the relationships between health-related quality of life (HRQoL) and individual factors of coping strategies. Between quality of life and active coping strategies, we found a clear negative correlation for both subclassifications of active coping strategies - problem-focused coping and positive reappraisal. Current methodologies assess quality of life in terms of the presence/absence of various problems. Thus, when health-related quality of life is perceived as reduced, coping strategies are activated.
We further analyzed the relationship of health-related quality of life for individual dimensions of problem-focused coping. This revealed a clear correlation for the dimension of seeking understanding, comprehension of the problem, and health-related quality of life, while the correlation with the dimension of direct problem solving was very weak. This finding thus corresponds to assumptions about the use of different types of coping as formulated by Lazarus and Folkman (1984).
The relationship was equally strong for the subclassification of active strategies - positive reappraisal. This type of coping is specifically focused on emotions and thoughts related to the problem. Thus, adolescents work with emotions and thoughts evoked by the problem to the same extent as with the problem itself.
Between health-related quality of life and avoidance strategies, we found a mild negative correlation, similarly with support-seeking strategies. Both relationships were already close to the value of a clear relationship. Here too, we could consider in the same sense as in the previous relationships. If the oncology patient perceives their health-related quality of life as lower, they tend to resort to these coping strategies as well, though not to the same extent as with active coping.
We can therefore conclude that in the case of reduced health-related quality of life, adolescent oncology patients resort to active coping strategies, while not focusing on direct problem solving. We supplement this finding with the finding of Aldridge and Roesch (2007), who found worse adaptation in pediatric oncology patients who used strategies focused on direct problem solving.
CONCLUSION
In this paper, we examined several variables and their mutual relationships; we formulated several questions and one hypothesis. Among the basic questions was the relationship of openness of communication to the other variables. The analyses revealed several interesting results with varying levels of correlation strength, although in most cases these were moderately strong relationships that outline a direction for certain considerations rather than explicit claims.
Our first hypothesis, in which we assumed a clear relationship between openness of communication about the illness and anxiety in adolescents, was not confirmed. In general, we also did not find a significant effect of open communication from parents on health-related quality of life as a whole; however, its positive effect was shown for some dimensions of health-related quality of life and some dimensions of coping strategies. It also turned out that adolescent oncology patients tended to adopt a more active approach in coping. They primarily sought to understand their situation and only minimally attempted to directly intervene or solve their situation. However, they also tended to avoid thoughts about the problem, which suggests a certain inconsistency in coping. Higher openness was also associated with greater use of coping strategies seeking support in the form of advice or help, assistance in solving the problem, and correspondingly less tendency to use avoidance coping strategies.
In the research, we encountered several limitations. First and foremost was the size of the research sample and the difficulty of data collection. The size was partly influenced by the fact that for some analyses we needed the cooperation of parents, who were not always willing. A limitation in size also lay in the specificity of the research sample; we estimate that currently the maximum number of potential probands in our country is around 25; longitudinal research is needed to obtain a larger sample. Another limitation lay in the methods used, given the aforementioned specificity of our sample. In our work, we used available methods, but it would be appropriate to use specific methods created especially for the needs of psycho-oncology. However, to our knowledge, these currently do not exist. In this context, we would also outline some recommendations for the future. Given our experience in data collection, we consider the use of qualitative methods, or a combination of quantitative and qualitative approaches, to be promising.
Authors: Mgr. Harinek Ľubomír, PhDr. Peter Szeliga, Ph.D. References:
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The paper was presented at the 5th annual conference titled "Psychology of Health 2010", held on May 19, 2010 in Bratislava. The conference was organized by the Health Psychology Section of the SPS at the SAS in cooperation with the Health Section of the Ministry of Health of the Slovak Republic. Further contributors to the preparation of the event included: National Institute of Cardiovascular Diseases in Bratislava, St. Elizabeth University of Health and Social Sciences in Bratislava, WHO Office in Slovakia, KISH Košice, Department of Psychology of the Faculty of Arts of the Catholic University in Ružomberok, and Department of Psychology of the Faculty of Arts of the University of Trnava.
The proceedings of the 5th Conference on Health Psychology, Bratislava, 2010 was published only in electronic form Availability: http://www.prohuman.sk/psychologia/zbornik-prispevkov-z-konferencie-psychologia-zdravia-2010