Psycho-Oncology Psycho-Oncology 19: 887–892 (2010) Published online 8 December 2009 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.1636
Coping with parental cancer: web-based peer support in children J. Giesbers1, I. M. Verdonck-de Leeuw2, F. J. van Zuuren3, N. Kleverlaan4 and M. H. van der Linden5,6 1
Department of Clinical Psychology, VU University, Amsterdam, The Netherlands Department of Otolaryngology–Head & Neck Surgery, VU University Medical Center, Amsterdam, The Netherlands 3 Department of Clinical Psychology, University of Amsterdam, Amsterdam, The Netherlands 4 Center for Psychosocial Care, Alkmaar, The Netherlands 5 Department of Medical Oncology, VU University Medical Center, Amsterdam, The Netherlands 6 Department of Medical Psychology, VU University Medical Center, Amsterdam, The Netherlands 2
* Correspondence to: Department of Medical Oncology, VU University Medical Center, P.O. Box 7057, 1007 MB, Amsterdam, The Netherlands. E-mail:
[email protected]
Received: 24 January 2009 Revised: 19 August 2009 Accepted: 20 August 2009
Abstract Objective: To investigate the use and content of web-based peer support in children coping with parental cancer. Methods: In children aged above 12 years, 158 forum discussions on the Dutch website www.kankerspoken.nl in a time-period of 3 months were investigated. Age, gender, number of discussions, participation and main activities on the website were quantitatively assessed. Contents of the discussions were qualitatively analyzed. Results: In total, 129 children and 8 adults participated on the website with an average age of 15.3 years. The majority was female (80%). On average, a child was on-line for 3 days and participated in 4 to 5 forum discussions. Main activities on the website were sharing personal experience, providing encouragement/support, providing and seeking information or advice and seeking contact outside of the website. Qualitative content analysis revealed that children regularly faced emotional problems and experienced a lack of understanding and communication in their direct environment. Conclusions: In dealing with parental cancer, children experience a variety of difficulties. This study offers a window into the use of web-based peer support by children dealing with parental cancer. Copyright r 2009 John Wiley & Sons, Ltd. Keywords: parental cancer; psychosocial oncology; children; adolescents; online support
Introduction Parental cancer has a significant impact on the whole family system. Based on estimated cancer prevalence in the Netherlands of 400 000 cancer patients in 2005, of whom approximately 9% were younger than 45 years, and an average of 2.1 children per parental couple, the prevalence of children living with parental cancer is estimated on at least 75 000. Parental cancer can have a great impact on the sense of security of a child, and children who are confronted with parental cancer have an increased risk to develop adjustment problems [1–5]. A recent review of the literature indicates that children experience emotional, behavioral, social, physical and cognitive problems [6]. Literature points out that characteristics of the child, the parent and the illness, the family system and the parent–child communication can be risk factors for developing problems [3,6–19]. The literature focuses especially on child’s age and gender as risk factors. Adolescents dealing with
Copyright r 2009 John Wiley & Sons, Ltd.
parental cancer report more psychosocial problems compared to adolescents with healthy parents [1,3,5,6,8,14,15,18–20]. This increased vulnerability might have different reasons. One possible explanation pertains to cognitive skills. Compared to younger children, they are more likely to recognize the gravity of the situation and the consequences of the illness [3,6,8,14,17]. Moreover, adolescents are in a conflicting situation because they have the developmental task to separate from the family. Also, they are more often confronted with the practical, psychological and social demands resulting from the illness of their father or mother [6]. Another risk factor in developing problems is gender. More than boys, adolescent girls seem to have an increased risk for developing emotional problems [3,5,8,15,20]. Girls seem to react differently to parental cancer than boys [9,14], possibly because of the identification with their mothers and increased role responsibilities [6,15,16,21,22]; also, increased vulnerability because of genetic risk for breast cancer may play a role [22,23].
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Adolescent Internet use has grown exponentially in the last decade and the Internet may be an effective tool in supporting children who have to cope with parental cancer. The main purpose of socalled e-health is to provide information, but it also has a communication and community function. Worldwide, Internet communities are developing fast in the form of online support groups. These communities provide the participants with the opportunity to exchange personal and professional support, information, experiences and patient advocacy. The advantage of an online support group is the twenty-four hours a day accessibility from the own home environment. It also guarantees the participant anonymity [24]. Little is known regarding e-health or support groups in children coping with parental cancer. The purpose of this study is to investigate the use and content of web-based peer support in children coping with parental cancer.
Methods In order to investigate the use of web-based peer support in children coping with parental cancer, the website www.kankerspoken.nl (Cancer Phantoms) was used. This website was composed for children of parents with cancer. The purpose of the website was to inform children and to create a place for these children where they can get in contact with others dealing with the same situation. The website is sponsored and monitored by the Dutch Cancer Society and provides information on cancer and forum discussions for three age groups: children younger than 12 years, children older than 12 years, and adults. To participate on the website, visitors have to log in with their name, e-mail address and age, after which they have the opportunity to start or join a discussion and post messages. The website was closely monitored by The Dutch Cancer Society. This monitoring took place few hours a day, 5 days a week. Next to a single intervention, sometimes irrelevant messages and abusive words were deleted online after consideration. Reference to suicide in discussions called for a lot of reactions from others. These discussions were closely followed and discussed with an expert. Other participants reacted on these comments like ‘I also thought about it, but it is no solution to the problem’ or ‘don’t’ do that, seek for help’. The present study focuses on the forum discussions of children older than 12 years. There is no age limit for this forum. Data for the present study consisted of all complete messages posted in a three-month period (1 January till 1 April 2005). These were analyzed quantitatively as well as qualitatively. To protect the identities of the participants, names, quotes and email addresses Copyright r 2009 John Wiley & Sons, Ltd.
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were removed, and texts were analyzed anonymously. First, a pilot study was done by the first author and two supervisors (ML and FvZ). They analyzed five forum discussions quantitatively and qualitatively. By exchanging their analyses and discussing them, they reached consensus. Further discussions were analyzed by one investigator (JG). The rough website data were supplied by the Dutch Cancer Society.
Quantitative analysis Age and gender of the participants were recorded as well as the number of forum discussions each participant participated in and the number of days each participant made use of the on-line forums. Because of the lack of studies on support groups in children, the literature of support groups for adults were studied. Preliminary categories were composed on the basis of the studies by Klemm et al. [24–26] on support groups in adults: information, personal opinion, encouragement/support, personal experience, word of thanks, humor/jokes and prayer/hope. The category ‘information’ was split up into six subcategories, because of the high frequency in previous literature based on webbased support groups for adults. After analyzing a few discussions, a few themes returned frequently. A lot of children were offering and asking for help dealing with their own situation and also participants exchanged mail addresses to chat on MSN Messenger. Based on these preliminary analyses, three categories were added: seeking contact outside of the website, offering help and asking for help. In conclusion, in the present study text fragments were classified in the following 15 categories: (1) providing factual information: this category included giving information about characteristics of the disease or treatment, like information about the type of cancer or treatment, (2) seeking factual information: participants sought information about the characteristics of the disease or treatment, (3) providing personal information: participants give information about their personal situation concerning the cancer in the family, like the type of cancer or what happened when their mother was in surgery, (4) seeking personal information: individuals asked about personal information, (5) providing advice: participants give each other advice how to deal with certain situations, (6) seeking advice, (7) personal opinion: participants give their opinion about messages or statements, (8) encouragement/support: participants give each other support, they gave sympathy or encourage each other to be strong, (9) personal experience: individuals talk about their own experiences with cancer, (10) words of thanks: participants thank others for their sympathy or other people who were important to them, (11) humor/jokes: in this category participants changed Psycho-Oncology 19: 887–892 (2010) DOI: 10.1002/pon
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jokes or made comments on a humoristic way, (12) prayer/hope: this category contained individuals making comments concerning hope or referring to God, (13) seeking contact outside of the website: participants want contact outside the site, like meeting others in real life or exchanging email addresses, (14) offering help: participant offer others help concerning the cancer of their parent, and (15) asking for help: participant asking others for help with sudden situations. Every discussion may comprise a number of categories. For each category, the number of discussions in which it occurred was counted.
Qualitative analysis Content analysis of each separate discussion was carried out with respect to topics children discussed, whereby we especially looked for outstanding and returning topics. The resemblances and differences between the separate discussions were compared, so that a complete picture arose. Three major categories were established: experiencing emotions and the expression of these on the website, problems facing parental cancer, and the types of advice children give each other.
Results Quantitative results During the time period of the study (3 months), 129 children and 8 adults participated in 158 forum discussions. The majority of the children were girls (80%). Ages ranged from 8 to 46 years old, with a median age of 14. The mean age was 15 years and 3 months. In total, there were eight persons older than 21 years who participated on this children’s forum website. Excluding these eight persons the mean age is 14 years and 8 months. Mean number of days of on-line participation per person in the three month period was 2.96 days. On average, a person started 1.15 discussions and participated in 4.42 discussions. Table 1 provides details on the formal categories for the sample of posted messages. The main activities on the website were: sharing experiences, providing support and seeking contact outside. When the categories on information and advice (category 1–7) are combined, it turns out that a significant part of the discussions were also dedicated to providing and seeking information or advice (57%).
Qualitative results Qualitative analysis reveals that regarding the expression of emotions, children reported several kinds of emotions (Table 2). Their fears and Copyright r 2009 John Wiley & Sons, Ltd.
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Table 1. Frequency of categories occurring in the 158 forum discussions Categories Personal experience Encouragement/support Seeking contact outside the site Providing advice Providing personal information Personal opinion Words of thanks Offering help Asking for help Seeking advice Prayer/hope Seeking personal information Humor/jokes Providing factual information Seeking factual information
Frequency
Percentage
117 92 56 41 23 21 20 18 16 14 9 6 4 4 2
74.1 58.2 35.4 25.9 14.6 13.3 12.7 11.4 10.1 8.9 5.7 3.8 2.5 2.5 1.3
uncertainties centered specifically on losing a loved one, but also uncertainty of results of medical tests and heredity of cancer were mentioned. In addition, in 13 discussions children expressed thoughts about suicide and in four discussions they talked about auto-mutilation (together one percent of all 158 discussions). Apart from emotions, several problems facing parental cancer were discussed on the website forum. A few problems and reactions from these children returned repeatedly. First of all, children experienced a lack of support from their environment, especially from their peers. They described that, in the beginning of the parental cancer, their peers seem to be interested, but that after a while their lives go on and they do not pay attention anymore. Second, children felt a lack of understanding from their environment. When they talked about feelings or experiences, they were not heard, or they thought that others judged them to be boring. Another problem children faced was that they had to hide their feelings and withdraw. These children could not or did not want to talk about the problems they were dealing with. Some children had concentration problems at school. They experienced difficulties in, for example, focusing on schoolwork or exams. A special problem children were facing at school was that other children were calling names using the word cancer. Finally, birthdays were important for the children online. Birthdays had a special significance because of the gathering of family members or the absence of a beloved person who was ill or deceased. In Table 2 the main advices children give each other are summed as well. These children talked a lot about adjustment as something you should actively strive for, and not as the end stage of a natural process. In the discussions some children specifically asked what they could do in order to adjust. Psycho-Oncology 19: 887–892 (2010) DOI: 10.1002/pon
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Table 2. Main topics and examples of citations (in italic) resulting from content analysis Expression of emotions Sadness Fear Uncertainty
Anger Guilt
I sometimes want to cuddle up to my father and cry till my tears run dry My father always thinks in worst case scenarios and so do I How long will it takey? Does mommy have a lot of painy.? Will she be alright? I don’t want to lose her yety It felt terrible to be so helpless, I can’t take the cancer away. It makes me angry Last summer my father died. He had been ill for a long time. I was the one that cried least of all. I feel guilty about that
Problems facing parental cancer Lack of social support
I can’t talk about it with my parents because I’m afraid of causing them even more sorrow Lack of receiving under- The outside world thinks we’re doing okay, but standingfrom environment they don’t see the misery our family is going through Hiding feelings yI never talk about it with other people, because I it would make me cry and I hate crying Concentration problems I’m not doing well at school as I can’t concentrate The word cancer used as I think it’s stupid to call someone names using a term of abuse the word cancer. You don’t want anybody to suffer from cancer Celebrating birthdays My first birthday without my mother was a horrible day. Everybody congratulated me which I hated Giving advice To write down problems I think it might help you to write down your problems, it certainly helped me To talk about feelings Try to phone the childline or talk to the school social worker.. To seek contact with fel- This forum is a nice place for talking to fellow low sufferers sufferers about having a sick parent/brother/ neighbour, etc. My mum is suffering from breast cancer and I am pleased with a site like this where you can tell your own story, give vent to your feelings and talk about your emotions To look for distraction Try to play a sport, do not lie down on the couch all dayy
The reactions of the eight participants older than 21 years did not deviate much from those of the participants younger than 21 years. Only 3 of the 158 discussions were started by an adult. Their messages were mainly reactive. The adults participating online gave children support and encouraged them to seek help. Some of the adults had a parent with cancer, but others were parents having cancer themselves.
Discussion The present study investigated the use and content of web-based peer support in children coping with parental cancer. It offers a window into the child experience of parental cancer. Looking at the Copyright r 2009 John Wiley & Sons, Ltd.
major activities of children posting messages, it seems that children were using the Internet as an outlet for their feelings and emotions. The messages online were mainly about recent experiences and supporting each other. The children were primarily exchanging personal feelings and experiences, more than exchanging information concerning the illness. This is in contrast to recent literature about online support groups for adults, where the information function is found to be the main activity [11–27]. Special attention should be paid to the aspect of emotions discussed online. Although some recent literature states that parental cancer does not always have a negative impact on adjustment [28–31], other studies point out that children dealing with parental cancer have a higher risk than average to develop emotional problems [1,6,7,11–15]. Looking at the forum discussions we also noticed that many children were dealing with intense emotions. However, it is not clear whether these emotions are just temporary or that these children face structural problems. Of special interest are the few children with suicide thoughts or with auto-mutilating behavior. It seems that these are incidental, but closely monitoring of the website is advisable. The question rises whether or not the supervisor should intervene in online discussions and what the responsibility of the website is. On the one hand, the anonymity and the easy accessibility of the website should be maintained, but on the other hand intervening should be possible in extreme cases. Advisable is to monitor the website closely and to create a manual whether or not to intervene. Besides, a warning sign at the beginning of the forum could make participants alert on what is acceptable on the website and what is not. Although the website was created for children, there were also a few adults participating online. Their messages did not differ a lot from the problems children online were facing. Apparently, because of the open character of the Internet, webbased support in children coping with parental cancer is mainly, but not exclusively, given by peers. It turned out that 80% of the participants on the website were female. This finding is consistent with a prior study of support groups for adults. In their study on online support groups, Seale et al. conclude that these sites can also be called ‘woman spaces’. Characteristic for these ‘woman spaces’ are not only the high percentage of woman online but also the way of communicating, namely warm greeting and support, and the emotional style [32]. The question arises why the percentage of boys visiting the website was much lower compared to girls in the present study. Are boys going through a different process? Is it difficult for them to talk about feelings with the Psycho-Oncology 19: 887–892 (2010) DOI: 10.1002/pon
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girls online or to share their way of communicating? It may also be that boys are less in need of (web-based) support. Earlier research revealed that, more than boys, adolescent girls have an increased risk for developing emotional problems [3,4,8,14,15,20] because of the identification with their mothers and their increased role responsibilities [3,6,9,11,14–16]. The results of the present study also link up to the fact that, in general, gender predicts usage of the Internet: boys spend more time surfing the web and playing games, whereas girls spend more time shopping and chatting online [33]. Development of webbased support, including for instance games, may be more adequate for boys.
Conclusions Results of this study reveal the importance of psychosocial care for children dealing with parental cancer. Web-based peer support is an easy and accessible option. Further prospective studies are needed to investigate efficacy of web-based peer support including children dealing with various types of parental cancer.
Acknowledgements The authors acknowledge the support of the Dutch Cancer Society.
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