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Journal of Psychosocial Oncology Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wjpo20
Feasibility of an Online Cognitive Behavioral–Based Group Intervention for Adolescents Treated for Cancer: A Pilot Study a
a
Heleen Maurice-Stam PhD , Linde Scholten PhD , Elisabeth A. de Gee b
b
b
MSc , Rianne A. van der Zanden MSc , Barbara Conijn MSc , Bob F. Last PhD
ac
& Martha A. Grootenhuis PhD
ac
a
Click for updates
Pediatric Psychosocial Department, Emma Children's Hospital Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands b
Trimbos Institute, Netherlands Institute of Mental Health and Addiction, Utrecht, The Netherlands c
Department of Developmental Psychology, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands Accepted author version posted online: 10 Mar 2014.Published online: 21 May 2014.
To cite this article: Heleen Maurice-Stam PhD, Linde Scholten PhD, Elisabeth A. de Gee MSc, Rianne A. van der Zanden MSc, Barbara Conijn MSc, Bob F. Last PhD & Martha A. Grootenhuis PhD (2014) Feasibility of an Online Cognitive Behavioral–Based Group Intervention for Adolescents Treated for Cancer: A Pilot Study, Journal of Psychosocial Oncology, 32:3, 310-321, DOI: 10.1080/07347332.2014.897290 To link to this article: http://dx.doi.org/10.1080/07347332.2014.897290
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Journal of Psychosocial Oncology, 32:310–321, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0734-7332 print / 1540-7586 online DOI: 10.1080/07347332.2014.897290
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Feasibility of an Online Cognitive Behavioral–Based Group Intervention for Adolescents Treated for Cancer: A Pilot Study HELEEN MAURICE-STAM, PhD and LINDE SCHOLTEN, PhD Pediatric Psychosocial Department, Emma Children’s Hospital Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
ELISABETH A. DE GEE, MSc, RIANNE A. VAN DER ZANDEN, MSc, and BARBARA CONIJN, MSc Trimbos Institute, Netherlands Institute of Mental Health and Addiction, Utrecht, The Netherlands
BOB F. LAST, PhD and MARTHA A. GROOTENHUIS, PhD Pediatric Psychosocial Department, Emma Children’s Hospital Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands; and Department of Developmental Psychology, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands
The objective of this study was to investigate satisfaction with and feasibility of an online cognitive behavioral-based group intervention (OK Onco Online) for adolescent childhood cancer survivors (CCS). The intervention, carried out by pediatric psychologists, aimed to prevent psychosocial problems. High levels of satisfaction were reported by the psychologists (n = 6) and the CCS (n = 11, age 11–17). The dropout rate was very low. Some recommendations for optimizing the intervention were mentioned. In conclusion, the positive evaluations by the CCS and the psychologists indicate that the online chat intervention OK Onco Online is a promising innovative group intervention for adolescent CCS. Further research is needed to confirm feasibility and to establish efficacy.
Address correspondence to Heleen Maurice-Stam, PhD, Pediatric Psychosocial Department, Room A3–241, Emma Children’s Hospital Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands. E-mail: h.maurice-stam @amc.uva.nl 310
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KEYWORDS e-health, internet, group intervention, childhood cancer, cognitive-behavioral, coping skills Increasing numbers of children are growing up with the consequences of childhood cancer because of the improvement in treatment (Magnani et al., 2006). Many childhood cancer survivors (CCS) have to cope with negative physical and psychosocial consequences of the disease and treatment, and with an increased risk of developing subsequent neoplasms (Geenen et al., 2007; Patenaude & Kupst, 2005; Stam, Grootenhuis, & Last, 2005). To adequately prevent and decrease psychosocial problems, easily accessible interventions that focus on coping skills are needed. Interventions that teach disease-related coping skills using cognitivebehavioral techniques showed positive psychosocial outcomes in children with a chronic disease (Barlow & Ellard, 2004; Last, Stam, Onland-van Nieuwenhuizen, & Grootenhuis, 2007; Plante, Lobato, & Engel, 2001). In The Netherlands, a face-to-face cognitive-behavioral-based group intervention for children with diverse chronic illnesses, called Op Koers (OK), appeared to be successful and effective (Last et al., 2007; Scholten et al., 2013). Based on this intervention, a face-to-face cognitive behavioral–based group intervention for children growing up with a history of cancer was developed and evaluated in The Netherlands, called Op Koers Oncologie (OK Onco) (Maurice-Stam, Silberbusch, Last, & Grootenhuis, 2009). The results were promising, but the accessibility of the intervention was limited because the course was only given in one of the seven oncology centers in The Netherlands. By offering this group intervention online, the reach of CCS could be optimized because it eliminates barriers such as travelling time and distance, and it fits into the digital environment in which many adolescents live. Therefore, the Emma Children’s Hospital Academic Medical Center came up with the idea to develop an online group intervention for CCS. E-Health technologies have developed extremely fast over the past years, including e-mental health (EMH). EMH concerns interventions that use the Internet to prevent and treat mental health problems, for example, health information websites, online health screening tools, online support groups, e-mail therapy, web counseling, and group therapy via chat room (Ybarra & Eaton, 2005). However, most EMH interventions focus on adults (Fenichel et al., 2002; Ritterband et al., 2003). In a systematic review on Internet self-management interventions for youth with chronic health conditions no online group interventions were reported (Stinson, Wilson, Gill, Yamada, & Holt, 2009). Internet group interventions were also not found in a meta-analytic review of e-health interventions in pediatrics (Cushing & Steele, 2010).
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An example of an online group intervention for young people described in the literature is the Dutch chat room intervention for adolescents and young adults with depressive symptoms, called Master Your Mood Online. The intervention appeared to be effective in reaching the target group and in reducing depressive symptoms and anxiety (Gerrits, van der Zanden, Visscher, & Conijn, 2007; van der Zanden, Kramer, Gerrits, & Cuijpers, 2012). Combining the technology and successful format of Master Your Mood Online with the content of the face-to-face OK Onco, an online cognitive behavioral–based group intervention for adolescent CCS was developed, called Op Koers Oncologie Online (OK Onco Online). To date, online cognitive behavioral–based group interventions for adolescents with a (history of) somatic disease have not been described in the literature. So, it is unknown whether it is feasible to translate a behavioralbased group intervention for these adolescents into an online application. For example, it is unidentified whether online behavioral-based group interventions set special requirements on the content and duration of the sessions and on the characteristics of the participants. To get a first impression of the potential of online behavioral-based group interventions for adolescents, we conducted a pilot study on the feasibility of OK Onco Online. This article describes the content of the online intervention and the results of a pilot study on satisfaction and feasibility, including the experiences of the participants and the trainers, and their suggestions for improvement of the intervention.
METHOD Intervention In collaboration with the Trimbos Institute, the Emma Children’s Hospital Academic Medical Center converted their face-to-face OK Onco into OK Onco Online for adolescent CCS. A website was built for the intervention (www.opkoersonline.nl). It includes information and registration forms for OK Onco Online, a secured chat room for the weekly sessions (Figure 1) and a secured homework site (called “My Op Koers”). The website also serves as a source of information for siblings and parents. In addition, there is a ShoutBoard for short messages and a section “Stories of . . . . ”, where CCS and siblings can share their experiences with cancer. The main goal of OK Onco Online is to prevent and/or treat psychosocial problems of adolescents successfully treated for childhood cancer, by teaching active use of coping skills focused on (1) seeking and giving information about the disease, (2) relaxation in stressful situations, (3) social competence, and (4) positive thinking (Table 1). Several elements of the different coping skills are taught in separate sessions but also addressed in the
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FIGURE 1 Example of a chat room session. Notes: On the left: chat screen with chat-talk, and Emoticons to express feelings. In the middle: information screen, where the trainers can provide information to the participants. At the bottom: information in the form of posters, videos and games to be selected by the trainers On the far right: listing of the names of participants and trainers. (Color figure available online.)
subsequent sessions. For detailed information we refer to Last et al. (2007). The goals and themes of the online sessions are in line with the face-to-face OK Onco (Last et al., 2007; Maurice-Stam et al., 2009), yet the interactive elements differ from the face-to-face program (see Table 1). For example, role-playing was replaced by demonstration videos and board games were converted to online games. The intervention consists of six structured chat sessions of 90 minutes each with home exercises. Sessions take place once a week at a set time, in a secured chat room that participants enter with their username and password. The sessions are given by two trained pediatric psychologists based on a detailed manual. An example of a chat session is presented in Figure 1. During and after the sessions, CCS could login on the homework site to view the intervention material, such as information sheets and videos, and to assign homework. The homework consists of exercises aimed at the use of the learned skills in daily life. The trainers have access to the homework site so that they can check the exercises completed by the participants. After six months, a booster session of 90 minutes was given. During the booster
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TABLE 1 Coping Skills and Elementsa of OK Oncob Practice/Means Coping skills
Online
• education about • chat discussion on sources of information the basis of an • skills to ask questions illustrated to the oncologist information sheet • demonstration video showing a conversation with the oncologist • chat discussion with oncologist Relaxation in stressful • relaxation exercises • relaxation exercise situations guided by text on a MP3 player • chat discussion on the basis of an illustrated information sheet Social competence • insight into • chat discussion on self-competence the basis of an (what you can and illustrated cannot do) information sheet • taking initiative and • video showing informing peers about reactions of peers the disease and its consequences • online game • coping with reactions from peers • informing peers about self-competencies Positive thinking • education about • online game thinking-feeling-doing • SMS text game about model feelings • skills to practice positive thinking • giving each other compliments Seeking and giving information about the disease
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Element
aSee bOK
Face-to-face • life discussion on the basis of a poster • role-play conversation with oncologist • life discussion with oncologist • relaxation exercise guided by text on a MP3 player • life discussion on the basis of a poster • life discussion on the basis of a poster • role-play of discussion with peers • board game
• board game • use of Spin-of-Feelings
Last, Stam, Onland-van Nieuwenhuizen & Grootenhuis (2007) for more details. Onco: group intervention for survivors of childhood cancer, named Op Koers Oncologie.
session, the content of the intervention is repeated and the use of the learned coping skills in daily life is discussed.
Procedure OK Onco Online was carried out from October 2009 to July 2010. Adolescent CCS were recruited from the Dutch pediatric oncology centers, by health care providers or via posters and leaflets. Furthermore, announcements were placed in oncology magazines and links were built with relevant websites. The response rate could not be assessed because of the open recruitment strategy used.
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Inclusion criteria were age 12 to 18, attending middle or high school, successful completion of cancer treatment. Adolescent CCS could register for OK Onco Online and the accompanying study via www.opkoersonline.nl. For CCS up to age 16, parental consent was necessary. One week before the first session, CCS received an e-mail with a login code for OK Onco Online. The CCS also received e-mails with a link to the online questionnaires for the pilot study. CCS could participate anonymously in the chat sessions by using a nickname. During a one-day workshop, pediatric psychologists with experience in the face-to-face intervention were trained to use the online environment. They were guided through all the sessions and practiced as trainer and participant.
Measurement and Analyses Satisfaction with and feasibility of OK Onco Online were measured with online questionnaires developed for this study (CCS) and structured interviews (trainers). The questionnaires measured satisfaction with the content and the technical aspects of the intervention in general, as well as satisfaction with and practical issues/problems regarding specific elements such as the website, the registration procedure and the chat room. Most questions had to be answered on a Likert-type scale (see Table 2). Trainers’ experiences and satisfaction with the content and the technical aspects of the intervention were assessed by an interview after the last chat session. They were also asked on suggestions for improvement of the intervention (see Table 3). Furthermore, the process of the OK Onco Online was monitored by the trainers, who recorded the course of all chat sessions in a logbook. For example, they recorded participation of the CCS (yes/no), motivation of the CCS (good, rather or not so good), and whether the CCS were able to comprehend the sessions (good, not so good, bad). The data were analyzed with descriptive statistics.
RESULTS Participants: CCS The website www.opkoersonline.nl counted 2,003 unique visitors between July 2009 and July 2010, as monitored by Google Analytic. The page about OK Onco Online was visited 1,313 times; 1,061 unique visits. A total number of 170 persons viewed the registration page of OK Onco Online. The number of visitors of the registration page could not be used to assess response rate because we did not know whether these visitors were eligible for the intervention.
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TABLE 2 Questionnaire Participants: Main Topics Registration Information before start intervention: Satisfactory? E-mail contact with trainers before start intervention: Desired? Phone contact with trainers before start intervention: Desired? General Expectations met? Overall grade Content Elements of OK Onco Online – to be scored for each specific element Home exercises - quantity - difficulty - utility Suggestions for improvement Format Readability chat room Format chat room Design / attractiveness chat room Usability chat room Sessions - number - duration Group size Chatting appropriate for the group course Preferred modality Anonymous participation in chat room appreciated Additional contact with participants desired? (chat room, forum, face-to-face) Additional contact with trainers desired? (chat room, email, phone, face-to-face)
yes – no – don’t know yes – no – don’t know yes – no – don’t know not – partly – satisfactory – good – very good excellent (10) . . . . bad (1) excellent (10) . . . . bad (1) little – okay – too much too difficult – understandable – too easy not useful – pretty useful – useful Open question good – satisfactory – moderate/poor good – satisfactory – moderate/poor good – satisfactory – moderate/poor good – satisfactory – moderate/poor too few – satisfactory – too many too long – satisfactory – too short too small – satisfactory – too large (totally) agree . . . . (totally) disagree face-to face – online (totally) agree . . . . (totally) disagree not desired – (sometimes) desired not desired – (sometimes) desired
In the pilot period of the intervention, 12 adolescents subscribed for and participated in OK Onco Online; 11 completed the questionnaires for the study. Participants were from all the seven pediatric oncology centers in The Netherlands. They were aged 11 to 17 years and diagnosed 2 to 6 years before, except one who was diagnosed 14 years ago. The 12 participating CCS were split up into four intervention groups, run at different times. In each group three CCS participated. Overall compliance was high; all CCS participated in all sessions of the intervention, though four CCS missed a part of a chat session. Of the 11 CCS who completed the questionnaires, 10 reported that the information about OK Onco Online and the registration procedure were sufficient, but some of them (three of 11) would have liked personal contact with the trainers before subscription, per e-mail or phone.
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TABLE 3 Interview with Trainers: Main Topics General opinion of OK Onco Online Trainers - division of tasks - required skills - required number Content - general - adjustments needed? - enough time for all course elements? - home exercises Participants - Group size: recommended number - Can participants deal with the content of the course? - Characteristics of the participants; appropriate for OK Onco Online: - age - motivation - education - severity of problems Advantages online versus face-to-face Disadvantages online versus face-to-face
Overall, the CCS were positive about OK Onco Online. The intervention met the expectations of the CCS and they valued the intervention with an 8.2. The different elements got average grades of 7.4 or above, with the exception of the relaxation exercise (6.4). The element of positive thinking “giving each other compliments” was appreciated most strongly (9.4). The CCS would have appreciated it if more attention was given to the late effects of the disease and treatment, to bullying because of cancer, and to how to tell their cancer history to their peers. All but one CCS were positive about the chat room (readability, format, design/attractiveness, usability), the home exercises, and the trainers. The opinions on the duration of the sessions and the number of participants were diverse. One half of the CCS would have liked chat sessions of shorter length (3). Two CCS would have liked more sessions, one CCS preferred fewer sessions. Most CCS (nine of 11) considered chatting appropriate for the group course and reported to prefer OK Onco Online above a face-to-face intervention. They experienced chatting to be a good way of talking about their problems regarding coping with the consequences of their disease (nine of 11, two neutral answers). Some participants (four of 11) appreciated anonymous participation. According to them, it was easier to talk about problems in a chat room than face-to-face because nobody knows or sees you. Despite this advantage, most CCS (nine of 11) reported that they wished to have had more contact with the other CCS, in the chat room or face-to-face. Extra contact with the trainers was desired sometimes (five of 11), in the chat room, via e-mail or face-to-face.
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TABLE 4 (Dis)advantages OK Oncoa Online versus Face-to-Face, According to the Trainers (Pediatric Psychologists) Reach At home Anonymous and invisible
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Digital environment of adolescents Innovative At home No face-to-face contact/intake No nonverbal communication/feedback Technical problems Time consuming Staying focused to the chat sessions
Advantage Distance plays no role Comfortable and time-saving for participants and parents Appearance plays no role; smaller barrier for participation; easier to talk about problems Could increase motivation Challenging/interesting for psychologists Disadvantage Disturbance by family members/friends is possible Extensive online screening for psychosocial problems necessary More difficult to make contact, to give examples and to evaluate understanding Delay Explanation and discussion by typewriting take more time than verbal communication. Harder when not together in the same room; e.g., distraction by smart phone and other Internet media
a. OK Onco: Group intervention for survivors of childhood cancer, named Op Koers Oncologie.
Trainers: Pediatric Psychologists OK Onco Online was carried out four times by two pediatric psychologists at a time, six trainers in total. Their general opinion about the OK Onco Online was positive. The trainers reported that the intervention was exciting and challenging to carry out. They considered the presence of two trainers as necessary. Furthermore, they proposed that trainers should have experience with therapeutic group interventions. Overall, the trainers were satisfied with the content of OK Onco Online, but they reported that the chat sessions were overloaded. The trainers preferred extension of the number of chat sessions from six to eight over lengthening the chat sessions. The trainers considered three to five to be the optimal number of participants in a chat intervention. They believed that, in general, the CCS were able to understand and work with the online material. OK Onco Online was considered less appropriate for CCS with severe learning disabilities. Trainers recommended grouping by age, for example, 12 to 15 and 16 to 18, because the age range of 12 to 18 years was too broad. Table 4 presents the disadvantages of OK Onco Online in comparison to the face-to-face intervention, according to the trainers.
DISCUSSION The results of this pilot study indicate that the chat room intervention OK Onco Online could be a feasible intervention for adolescent CCS. The
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participating adolescents and the psychologists reported high levels of satisfaction regarding most aspects of the intervention. The dropout rate was very low, which is remarkable because high attrition rates are common in studies of Internet-based interventions, especially in adolescents (van der Zanden et al., 2012). This study revealed several issues that could be improved. With regard to the content of the intervention, some CCS desired more attention to the late effects of the disease and treatment, to bullying because of cancer, and to how to tell their cancer history to their peers. According to the psychologists, the content of OK Onco Online was satisfactory. Yet there was lack of time in the chat sessions because discussing the different themes took more time in the online chat room than during the face-to-face group intervention. Therefore, the number of chat sessions has been extended from six to eight. With respect to the participants, it is recommended to arrange the online intervention by age, for example, 12 to 15 and 16 to 18. Furthermore, OK Onco Online appeared to be less appropriate for CCS suffering from severe learning disabilities, for example, as a consequence of the treatment for a brain tumor. However, having been treated for a brain tumor is not a contraindication as many survivors of brain tumor suffer from mild neurocognitive deficits (e.g., slow processing speed). Mild deficits did not hinder participation in the chat room intervention. Finally, guidelines on screening for serious emotional problems are needed, because there is no intake or face-to-face contact with the participants. Some limitations should be mentioned. Performance of the psychologists was not assessed so that we were not sure that the intervention was carried out according to the detailed manual. Furthermore, the number of participants was low so that further research is needed to provide additional evidence that the intervention is well received and accepted. Some recommendations for improving the response are in place. First, CCS and their parents, oncologists, psychologists, and other health care providers should continuously be informed about OK Onco Online, via posters, leaflets, announcements, and via links to the website www.opkoersonline.nl. Second, the threshold for participation could be lowered by placing a demonstration video on the website and showing photos of the trainers, to get a better impression of the intervention.
CONCLUSION The positive evaluations by the CCS and the psychologists indicate that the online chat intervention OK Onco Online is a promising innovative group intervention for adolescent CCS, carried out by psychologists according to a detailed manual. The online intervention is easily accessible and could be a valuable extension of the current range of interventions for CSS. Future research should reveal whether the advantages of online group interventions
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outweigh the disadvantages. Further research is needed to demonstrate that the intervention can improve coping skills and psychosocial functioning, and thus prevent psychosocial problems in adolescents.
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ACKNOWLEDGMENTS We would like to thank all adolescents and psychologists who participated in this study. Our special thanks go to Eline Aukema, Charlotte Kuiper, Liesbeth van der Sluijs Veer, and Margreet van Zelm van Eldik, who contributed substantively to the manual of OK Onco Online.
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Journal of Psychosocial Oncology Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wjpo20
Feasibility of an Online Cognitive Behavioral–Based Group Intervention for Adolescents Treated for Cancer: A Pilot Study a
a
Heleen Maurice-Stam PhD , Linde Scholten PhD , Elisabeth A. de Gee b
b
b
MSc , Rianne A. van der Zanden MSc , Barbara Conijn MSc , Bob F. Last PhD
ac
& Martha A. Grootenhuis PhD
ac
a
Click for updates
Pediatric Psychosocial Department, Emma Children's Hospital Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands b
Trimbos Institute, Netherlands Institute of Mental Health and Addiction, Utrecht, The Netherlands c
Department of Developmental Psychology, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands Accepted author version posted online: 10 Mar 2014.Published online: 21 May 2014.
To cite this article: Heleen Maurice-Stam PhD, Linde Scholten PhD, Elisabeth A. de Gee MSc, Rianne A. van der Zanden MSc, Barbara Conijn MSc, Bob F. Last PhD & Martha A. Grootenhuis PhD (2014) Feasibility of an Online Cognitive Behavioral–Based Group Intervention for Adolescents Treated for Cancer: A Pilot Study, Journal of Psychosocial Oncology, 32:3, 310-321, DOI: 10.1080/07347332.2014.897290 To link to this article: http://dx.doi.org/10.1080/07347332.2014.897290
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or
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This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions
Journal of Psychosocial Oncology, 32:310–321, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0734-7332 print / 1540-7586 online DOI: 10.1080/07347332.2014.897290
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Feasibility of an Online Cognitive Behavioral–Based Group Intervention for Adolescents Treated for Cancer: A Pilot Study HELEEN MAURICE-STAM, PhD and LINDE SCHOLTEN, PhD Pediatric Psychosocial Department, Emma Children’s Hospital Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
ELISABETH A. DE GEE, MSc, RIANNE A. VAN DER ZANDEN, MSc, and BARBARA CONIJN, MSc Trimbos Institute, Netherlands Institute of Mental Health and Addiction, Utrecht, The Netherlands
BOB F. LAST, PhD and MARTHA A. GROOTENHUIS, PhD Pediatric Psychosocial Department, Emma Children’s Hospital Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands; and Department of Developmental Psychology, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands
The objective of this study was to investigate satisfaction with and feasibility of an online cognitive behavioral-based group intervention (OK Onco Online) for adolescent childhood cancer survivors (CCS). The intervention, carried out by pediatric psychologists, aimed to prevent psychosocial problems. High levels of satisfaction were reported by the psychologists (n = 6) and the CCS (n = 11, age 11–17). The dropout rate was very low. Some recommendations for optimizing the intervention were mentioned. In conclusion, the positive evaluations by the CCS and the psychologists indicate that the online chat intervention OK Onco Online is a promising innovative group intervention for adolescent CCS. Further research is needed to confirm feasibility and to establish efficacy.
Address correspondence to Heleen Maurice-Stam, PhD, Pediatric Psychosocial Department, Room A3–241, Emma Children’s Hospital Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands. E-mail: h.maurice-stam @amc.uva.nl 310
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KEYWORDS e-health, internet, group intervention, childhood cancer, cognitive-behavioral, coping skills Increasing numbers of children are growing up with the consequences of childhood cancer because of the improvement in treatment (Magnani et al., 2006). Many childhood cancer survivors (CCS) have to cope with negative physical and psychosocial consequences of the disease and treatment, and with an increased risk of developing subsequent neoplasms (Geenen et al., 2007; Patenaude & Kupst, 2005; Stam, Grootenhuis, & Last, 2005). To adequately prevent and decrease psychosocial problems, easily accessible interventions that focus on coping skills are needed. Interventions that teach disease-related coping skills using cognitivebehavioral techniques showed positive psychosocial outcomes in children with a chronic disease (Barlow & Ellard, 2004; Last, Stam, Onland-van Nieuwenhuizen, & Grootenhuis, 2007; Plante, Lobato, & Engel, 2001). In The Netherlands, a face-to-face cognitive-behavioral-based group intervention for children with diverse chronic illnesses, called Op Koers (OK), appeared to be successful and effective (Last et al., 2007; Scholten et al., 2013). Based on this intervention, a face-to-face cognitive behavioral–based group intervention for children growing up with a history of cancer was developed and evaluated in The Netherlands, called Op Koers Oncologie (OK Onco) (Maurice-Stam, Silberbusch, Last, & Grootenhuis, 2009). The results were promising, but the accessibility of the intervention was limited because the course was only given in one of the seven oncology centers in The Netherlands. By offering this group intervention online, the reach of CCS could be optimized because it eliminates barriers such as travelling time and distance, and it fits into the digital environment in which many adolescents live. Therefore, the Emma Children’s Hospital Academic Medical Center came up with the idea to develop an online group intervention for CCS. E-Health technologies have developed extremely fast over the past years, including e-mental health (EMH). EMH concerns interventions that use the Internet to prevent and treat mental health problems, for example, health information websites, online health screening tools, online support groups, e-mail therapy, web counseling, and group therapy via chat room (Ybarra & Eaton, 2005). However, most EMH interventions focus on adults (Fenichel et al., 2002; Ritterband et al., 2003). In a systematic review on Internet self-management interventions for youth with chronic health conditions no online group interventions were reported (Stinson, Wilson, Gill, Yamada, & Holt, 2009). Internet group interventions were also not found in a meta-analytic review of e-health interventions in pediatrics (Cushing & Steele, 2010).
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An example of an online group intervention for young people described in the literature is the Dutch chat room intervention for adolescents and young adults with depressive symptoms, called Master Your Mood Online. The intervention appeared to be effective in reaching the target group and in reducing depressive symptoms and anxiety (Gerrits, van der Zanden, Visscher, & Conijn, 2007; van der Zanden, Kramer, Gerrits, & Cuijpers, 2012). Combining the technology and successful format of Master Your Mood Online with the content of the face-to-face OK Onco, an online cognitive behavioral–based group intervention for adolescent CCS was developed, called Op Koers Oncologie Online (OK Onco Online). To date, online cognitive behavioral–based group interventions for adolescents with a (history of) somatic disease have not been described in the literature. So, it is unknown whether it is feasible to translate a behavioralbased group intervention for these adolescents into an online application. For example, it is unidentified whether online behavioral-based group interventions set special requirements on the content and duration of the sessions and on the characteristics of the participants. To get a first impression of the potential of online behavioral-based group interventions for adolescents, we conducted a pilot study on the feasibility of OK Onco Online. This article describes the content of the online intervention and the results of a pilot study on satisfaction and feasibility, including the experiences of the participants and the trainers, and their suggestions for improvement of the intervention.
METHOD Intervention In collaboration with the Trimbos Institute, the Emma Children’s Hospital Academic Medical Center converted their face-to-face OK Onco into OK Onco Online for adolescent CCS. A website was built for the intervention (www.opkoersonline.nl). It includes information and registration forms for OK Onco Online, a secured chat room for the weekly sessions (Figure 1) and a secured homework site (called “My Op Koers”). The website also serves as a source of information for siblings and parents. In addition, there is a ShoutBoard for short messages and a section “Stories of . . . . ”, where CCS and siblings can share their experiences with cancer. The main goal of OK Onco Online is to prevent and/or treat psychosocial problems of adolescents successfully treated for childhood cancer, by teaching active use of coping skills focused on (1) seeking and giving information about the disease, (2) relaxation in stressful situations, (3) social competence, and (4) positive thinking (Table 1). Several elements of the different coping skills are taught in separate sessions but also addressed in the
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FIGURE 1 Example of a chat room session. Notes: On the left: chat screen with chat-talk, and Emoticons to express feelings. In the middle: information screen, where the trainers can provide information to the participants. At the bottom: information in the form of posters, videos and games to be selected by the trainers On the far right: listing of the names of participants and trainers. (Color figure available online.)
subsequent sessions. For detailed information we refer to Last et al. (2007). The goals and themes of the online sessions are in line with the face-to-face OK Onco (Last et al., 2007; Maurice-Stam et al., 2009), yet the interactive elements differ from the face-to-face program (see Table 1). For example, role-playing was replaced by demonstration videos and board games were converted to online games. The intervention consists of six structured chat sessions of 90 minutes each with home exercises. Sessions take place once a week at a set time, in a secured chat room that participants enter with their username and password. The sessions are given by two trained pediatric psychologists based on a detailed manual. An example of a chat session is presented in Figure 1. During and after the sessions, CCS could login on the homework site to view the intervention material, such as information sheets and videos, and to assign homework. The homework consists of exercises aimed at the use of the learned skills in daily life. The trainers have access to the homework site so that they can check the exercises completed by the participants. After six months, a booster session of 90 minutes was given. During the booster
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TABLE 1 Coping Skills and Elementsa of OK Oncob Practice/Means Coping skills
Online
• education about • chat discussion on sources of information the basis of an • skills to ask questions illustrated to the oncologist information sheet • demonstration video showing a conversation with the oncologist • chat discussion with oncologist Relaxation in stressful • relaxation exercises • relaxation exercise situations guided by text on a MP3 player • chat discussion on the basis of an illustrated information sheet Social competence • insight into • chat discussion on self-competence the basis of an (what you can and illustrated cannot do) information sheet • taking initiative and • video showing informing peers about reactions of peers the disease and its consequences • online game • coping with reactions from peers • informing peers about self-competencies Positive thinking • education about • online game thinking-feeling-doing • SMS text game about model feelings • skills to practice positive thinking • giving each other compliments Seeking and giving information about the disease
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Element
aSee bOK
Face-to-face • life discussion on the basis of a poster • role-play conversation with oncologist • life discussion with oncologist • relaxation exercise guided by text on a MP3 player • life discussion on the basis of a poster • life discussion on the basis of a poster • role-play of discussion with peers • board game
• board game • use of Spin-of-Feelings
Last, Stam, Onland-van Nieuwenhuizen & Grootenhuis (2007) for more details. Onco: group intervention for survivors of childhood cancer, named Op Koers Oncologie.
session, the content of the intervention is repeated and the use of the learned coping skills in daily life is discussed.
Procedure OK Onco Online was carried out from October 2009 to July 2010. Adolescent CCS were recruited from the Dutch pediatric oncology centers, by health care providers or via posters and leaflets. Furthermore, announcements were placed in oncology magazines and links were built with relevant websites. The response rate could not be assessed because of the open recruitment strategy used.
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Inclusion criteria were age 12 to 18, attending middle or high school, successful completion of cancer treatment. Adolescent CCS could register for OK Onco Online and the accompanying study via www.opkoersonline.nl. For CCS up to age 16, parental consent was necessary. One week before the first session, CCS received an e-mail with a login code for OK Onco Online. The CCS also received e-mails with a link to the online questionnaires for the pilot study. CCS could participate anonymously in the chat sessions by using a nickname. During a one-day workshop, pediatric psychologists with experience in the face-to-face intervention were trained to use the online environment. They were guided through all the sessions and practiced as trainer and participant.
Measurement and Analyses Satisfaction with and feasibility of OK Onco Online were measured with online questionnaires developed for this study (CCS) and structured interviews (trainers). The questionnaires measured satisfaction with the content and the technical aspects of the intervention in general, as well as satisfaction with and practical issues/problems regarding specific elements such as the website, the registration procedure and the chat room. Most questions had to be answered on a Likert-type scale (see Table 2). Trainers’ experiences and satisfaction with the content and the technical aspects of the intervention were assessed by an interview after the last chat session. They were also asked on suggestions for improvement of the intervention (see Table 3). Furthermore, the process of the OK Onco Online was monitored by the trainers, who recorded the course of all chat sessions in a logbook. For example, they recorded participation of the CCS (yes/no), motivation of the CCS (good, rather or not so good), and whether the CCS were able to comprehend the sessions (good, not so good, bad). The data were analyzed with descriptive statistics.
RESULTS Participants: CCS The website www.opkoersonline.nl counted 2,003 unique visitors between July 2009 and July 2010, as monitored by Google Analytic. The page about OK Onco Online was visited 1,313 times; 1,061 unique visits. A total number of 170 persons viewed the registration page of OK Onco Online. The number of visitors of the registration page could not be used to assess response rate because we did not know whether these visitors were eligible for the intervention.
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TABLE 2 Questionnaire Participants: Main Topics Registration Information before start intervention: Satisfactory? E-mail contact with trainers before start intervention: Desired? Phone contact with trainers before start intervention: Desired? General Expectations met? Overall grade Content Elements of OK Onco Online – to be scored for each specific element Home exercises - quantity - difficulty - utility Suggestions for improvement Format Readability chat room Format chat room Design / attractiveness chat room Usability chat room Sessions - number - duration Group size Chatting appropriate for the group course Preferred modality Anonymous participation in chat room appreciated Additional contact with participants desired? (chat room, forum, face-to-face) Additional contact with trainers desired? (chat room, email, phone, face-to-face)
yes – no – don’t know yes – no – don’t know yes – no – don’t know not – partly – satisfactory – good – very good excellent (10) . . . . bad (1) excellent (10) . . . . bad (1) little – okay – too much too difficult – understandable – too easy not useful – pretty useful – useful Open question good – satisfactory – moderate/poor good – satisfactory – moderate/poor good – satisfactory – moderate/poor good – satisfactory – moderate/poor too few – satisfactory – too many too long – satisfactory – too short too small – satisfactory – too large (totally) agree . . . . (totally) disagree face-to face – online (totally) agree . . . . (totally) disagree not desired – (sometimes) desired not desired – (sometimes) desired
In the pilot period of the intervention, 12 adolescents subscribed for and participated in OK Onco Online; 11 completed the questionnaires for the study. Participants were from all the seven pediatric oncology centers in The Netherlands. They were aged 11 to 17 years and diagnosed 2 to 6 years before, except one who was diagnosed 14 years ago. The 12 participating CCS were split up into four intervention groups, run at different times. In each group three CCS participated. Overall compliance was high; all CCS participated in all sessions of the intervention, though four CCS missed a part of a chat session. Of the 11 CCS who completed the questionnaires, 10 reported that the information about OK Onco Online and the registration procedure were sufficient, but some of them (three of 11) would have liked personal contact with the trainers before subscription, per e-mail or phone.
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TABLE 3 Interview with Trainers: Main Topics General opinion of OK Onco Online Trainers - division of tasks - required skills - required number Content - general - adjustments needed? - enough time for all course elements? - home exercises Participants - Group size: recommended number - Can participants deal with the content of the course? - Characteristics of the participants; appropriate for OK Onco Online: - age - motivation - education - severity of problems Advantages online versus face-to-face Disadvantages online versus face-to-face
Overall, the CCS were positive about OK Onco Online. The intervention met the expectations of the CCS and they valued the intervention with an 8.2. The different elements got average grades of 7.4 or above, with the exception of the relaxation exercise (6.4). The element of positive thinking “giving each other compliments” was appreciated most strongly (9.4). The CCS would have appreciated it if more attention was given to the late effects of the disease and treatment, to bullying because of cancer, and to how to tell their cancer history to their peers. All but one CCS were positive about the chat room (readability, format, design/attractiveness, usability), the home exercises, and the trainers. The opinions on the duration of the sessions and the number of participants were diverse. One half of the CCS would have liked chat sessions of shorter length (3). Two CCS would have liked more sessions, one CCS preferred fewer sessions. Most CCS (nine of 11) considered chatting appropriate for the group course and reported to prefer OK Onco Online above a face-to-face intervention. They experienced chatting to be a good way of talking about their problems regarding coping with the consequences of their disease (nine of 11, two neutral answers). Some participants (four of 11) appreciated anonymous participation. According to them, it was easier to talk about problems in a chat room than face-to-face because nobody knows or sees you. Despite this advantage, most CCS (nine of 11) reported that they wished to have had more contact with the other CCS, in the chat room or face-to-face. Extra contact with the trainers was desired sometimes (five of 11), in the chat room, via e-mail or face-to-face.
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TABLE 4 (Dis)advantages OK Oncoa Online versus Face-to-Face, According to the Trainers (Pediatric Psychologists) Reach At home Anonymous and invisible
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Digital environment of adolescents Innovative At home No face-to-face contact/intake No nonverbal communication/feedback Technical problems Time consuming Staying focused to the chat sessions
Advantage Distance plays no role Comfortable and time-saving for participants and parents Appearance plays no role; smaller barrier for participation; easier to talk about problems Could increase motivation Challenging/interesting for psychologists Disadvantage Disturbance by family members/friends is possible Extensive online screening for psychosocial problems necessary More difficult to make contact, to give examples and to evaluate understanding Delay Explanation and discussion by typewriting take more time than verbal communication. Harder when not together in the same room; e.g., distraction by smart phone and other Internet media
a. OK Onco: Group intervention for survivors of childhood cancer, named Op Koers Oncologie.
Trainers: Pediatric Psychologists OK Onco Online was carried out four times by two pediatric psychologists at a time, six trainers in total. Their general opinion about the OK Onco Online was positive. The trainers reported that the intervention was exciting and challenging to carry out. They considered the presence of two trainers as necessary. Furthermore, they proposed that trainers should have experience with therapeutic group interventions. Overall, the trainers were satisfied with the content of OK Onco Online, but they reported that the chat sessions were overloaded. The trainers preferred extension of the number of chat sessions from six to eight over lengthening the chat sessions. The trainers considered three to five to be the optimal number of participants in a chat intervention. They believed that, in general, the CCS were able to understand and work with the online material. OK Onco Online was considered less appropriate for CCS with severe learning disabilities. Trainers recommended grouping by age, for example, 12 to 15 and 16 to 18, because the age range of 12 to 18 years was too broad. Table 4 presents the disadvantages of OK Onco Online in comparison to the face-to-face intervention, according to the trainers.
DISCUSSION The results of this pilot study indicate that the chat room intervention OK Onco Online could be a feasible intervention for adolescent CCS. The
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participating adolescents and the psychologists reported high levels of satisfaction regarding most aspects of the intervention. The dropout rate was very low, which is remarkable because high attrition rates are common in studies of Internet-based interventions, especially in adolescents (van der Zanden et al., 2012). This study revealed several issues that could be improved. With regard to the content of the intervention, some CCS desired more attention to the late effects of the disease and treatment, to bullying because of cancer, and to how to tell their cancer history to their peers. According to the psychologists, the content of OK Onco Online was satisfactory. Yet there was lack of time in the chat sessions because discussing the different themes took more time in the online chat room than during the face-to-face group intervention. Therefore, the number of chat sessions has been extended from six to eight. With respect to the participants, it is recommended to arrange the online intervention by age, for example, 12 to 15 and 16 to 18. Furthermore, OK Onco Online appeared to be less appropriate for CCS suffering from severe learning disabilities, for example, as a consequence of the treatment for a brain tumor. However, having been treated for a brain tumor is not a contraindication as many survivors of brain tumor suffer from mild neurocognitive deficits (e.g., slow processing speed). Mild deficits did not hinder participation in the chat room intervention. Finally, guidelines on screening for serious emotional problems are needed, because there is no intake or face-to-face contact with the participants. Some limitations should be mentioned. Performance of the psychologists was not assessed so that we were not sure that the intervention was carried out according to the detailed manual. Furthermore, the number of participants was low so that further research is needed to provide additional evidence that the intervention is well received and accepted. Some recommendations for improving the response are in place. First, CCS and their parents, oncologists, psychologists, and other health care providers should continuously be informed about OK Onco Online, via posters, leaflets, announcements, and via links to the website www.opkoersonline.nl. Second, the threshold for participation could be lowered by placing a demonstration video on the website and showing photos of the trainers, to get a better impression of the intervention.
CONCLUSION The positive evaluations by the CCS and the psychologists indicate that the online chat intervention OK Onco Online is a promising innovative group intervention for adolescent CCS, carried out by psychologists according to a detailed manual. The online intervention is easily accessible and could be a valuable extension of the current range of interventions for CSS. Future research should reveal whether the advantages of online group interventions
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outweigh the disadvantages. Further research is needed to demonstrate that the intervention can improve coping skills and psychosocial functioning, and thus prevent psychosocial problems in adolescents.
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ACKNOWLEDGMENTS We would like to thank all adolescents and psychologists who participated in this study. Our special thanks go to Eline Aukema, Charlotte Kuiper, Liesbeth van der Sluijs Veer, and Margreet van Zelm van Eldik, who contributed substantively to the manual of OK Onco Online.
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