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Walking Two Worlds—Adolescent and Young Adult Oncology. Proceedings of a Symposium held by the Pediatric Oncology Group of Ontario Supplement to Cancer
Support and Intervention Groups for Adolescents With Cancer in Two Ontario Communities Maru Barrera, PhD1 Sheila Damore-Petingola, MSW2 Carly Fleming, MEd3 Judy Mayer, RN4 1
Department of Psychology, The Hospital for Sick Children and University of Toronto, Toronto, Ontario, Canada.
Adolescents who are treated for cancer must learn to negotiate challenging developmental tasks in the context of their treatment and adverse effects. Adverse affects of disease and treatment may prevent some of these adolescents from achieving full psychosocial development. Two programs developed independently to address the psychosocial and unique contextual needs of adolescents and young adults from different geographic regions in Ontario, Central urban and Northeastern rural, are described. The program in the urban area consists of eight 2-h sessions that combined structured creative activities and informal discussions of issues generated by
Department of Social Work, Sudbury Regional Hospital, Sudbury, Ontario, Canada.
adolescents; it includes a pre- post- intervention evaluation with standardized ques-
3
group that encourages sharing personal experiences and an annual expressive art
2
Department of Psychology, The Hospital for Sick Children, Toronto, Ontario, Canada. 4
Department of Nursing, Sudbury Regional Hospital, Sudbury, Ontario, Canada.
tionnaires. The Northeastern rural program consists of a monthly support open retreat; both components include informal evaluation. Formal evaluation of these programs is in progress. Informal feedback from participants and parents suggest positive effects. These distinct and unique programs continue to evolve, as they address the unique psychosocial needs of adolescents and young adults in urban and rural areas. Cancer 2006;107(7 Suppl):1680–5. 2006 American Cancer Society.
KEYWORDS: adolescent, neoplasms, social support, psychosocial development.
A
Presented at the Pediatric Oncology Group of Ontario Symposium ‘‘Walking Two Worlds—Adolescent and Young Adult Oncology,’’ Toronto, Ontario, Canada, November 2003. Address for reprints: Maru Barrera, PhD, CPsych, Department of Psychology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G X8, Canada; Fax: (416) 813-8839; E-mail:
[email protected] Received August 30, 2005; accepted December 27, 2005.
dolescence is a difficult period in the life of an individual as it is characterized by many physical, psychological, and social changes. Adolescents who are treated for cancer must learn to negotiate challenging developmental tasks in the context of their treatment.1–5 Although many adolescents have fully developed cognitive skills to understand the nature and implication of their disease and treatment, many of them may not have the personal resources and coping strategies to manage the adversities associated with cancer treatment.6 During cancer treatment adolescents experience stressful events, such as alopecia, weight loss or gain, fatigue, nausea and vomiting, school absence, reduced contact with peers, and greater dependence on parents,1,3,6 that can seriously affect their normal development (identity, independency, social relationships with peers, intimacy). Changes in adolescents’ physical appearance may have detrimental effects on their development of good body image and positive selfesteem.7 Adolescents who are treated for cancer, particularly those treated for brain tumors, have been found to be at risk for increased anxiety1 and depression symptoms,8–10 social isolation or less participation in peer activities,11 and reduced quality of life.8 The cancer experience,
ª 2006 American Cancer Society DOI 10.1002/cncr.22108 Published online 18 August 2006 in Wiley InterScience (www.interscience.wiley.com).
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combined with other stressors typical of adolescence, may have serious repercussions for the overall well being and psychosocial adjustment of adolescents treated for cancer. To address these concerns, previous intervention programs for adolescents had provided a variety of support groups,3,4,12–15 including a comprehensive psychosocial program for adolescents and parents.15 Although the effectiveness of the intervention has not been demonstrated in these programs, the anecdotal and limited pre- and postintervention evaluation in existence suggest beneficial effects. As well, there are some important lessons we have learned from this early work to develop intervention programs that serve as important mechanisms to facilitate age-appropriate socialization and psychological adaptation among adolescent cancer survivors. The 2003 POGO Symposium Adolescent and Young Adult Oncology—Walking Two Worlds provided the opportunity for 2 pediatric cancer programs to report on their experiences in establishing group intervention for adolescents living with cancer. This manuscript records 2 invited presentations in one session that described 2 different intervention programs that were developed independently in 2 different regions of Ontario but have similar objectives: to offer psychosocial interventions as potential mechanisms for psychosocial adaptation to cancer treatment. One program was developed in a large tertiary children’s hospital that serves a diverse pediatric oncology population located in an urban metropolitan area in central Ontario. The program at the Northeastern Ontario Regional Cancer Centre was developed in and is responsive to the needs of teen/young adult patients and their families residing in the Greater City of Sudbury and rural northeastern Ontario. However, both programs share the recognition of the special needs of teenagers that often go unaddressed and the commitment to improve the quality of life of this at risk population. This article will appeal to the psychosocial oncology researcher as well as the clinician.
THE GROUP INTERVENTION FOR TEENS WITH CANCER PROGRAM The Group Intervention for Teens with Cancer Program (GITCP) developed at The Hospital for Sick Children (HSC), Toronto, Ontario, aimed to prevent or ameliorate the risks for psychosocial maladjustment in adolescents with cancer.
Development of the GITCP Conceptually, the adolescent program was established based on the assumption that the cancer experience
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would interfere with normal teen development, particularly their social relationships with peers and autonomy.16 Thus, psychosocial interventions were designed as potential mechanisms for psychosocial adaptation to cancer treatment. The specific implementation and planning of the group intervention program was guided by principles from cognitive behavior therapy,17 social skills training,18 social learning theory of self-efficacy,19 family systems theory, and concepts of group dynamics. This integrated model is similar to that used in our previous work.20,21 This model allows for flexibility in addressing the individual needs of each group participant, but maintains consistency across participants and consecutive groups. Empirically, the development of this group was based on the previous intervention literature, 2 focus groups conducted with adolescents,22 the Siblings Coping Together (SCT) program—a psychoeducational group program for children and adolescents who have a sibling treated for cancer20,21—and an ongoing social skills training program for child and adolescent survivors of childhood brain tumors.23 Adolescent focus groups. Focus groups are part of a number of qualitative techniques that are useful in understanding subjective constructs (such as the psychological effects of cancer in adolescents). They are valuable in obtaining direct information from the subjects we are studying in a carefully planned discussion regarding a defined area of interest, conducted in a friendly and nonthreatening environment that facilitates honest and open communication.24 Two focus groups with teens with cancer were conducted to explore the perceived psychosocial needs of adolescents treated for cancer in this institution.22 Nine adolescents (5 males and 4 females), age 15–21 years, participated. Teens were asked about the best things and the worse things about their lives since they were diagnosed with cancer, their level of interest in attending a group for teens, and their ideas regarding the format of the group. The focus groups were audiotaped and common themes were abstracted from the transcript by 2 independent coders. All teens expressed interest in attending a group ‘‘if it had the right content.’’ The following are the components of a group that teens considered important: to engage with peers in a fun yet challenging atmosphere; opportunities to address sensitive issues such as fertility concerns, physical changes, self-image, and sex; to discuss these issues in an informal, supportive, non-judgmental atmosphere; flexibility, stressing that they did not want it to be like school. Finally, they expressed interest in planning and participating in a special social event.
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Siblings coping together program. Our team has been running the SCT Program since 1997. To date, 84 siblings of children with cancer, ranging in age from 6 to 18 years, have participated in these groups. Specifically, groups for children between the age of 6 and 11 years and 12 and 18 years have been run successfully using a training manual developed for this program. The nature of the program format and activities differs depending on the age group, with more flexibility being built into the groups for adolescents. Research has indicated that the program is effective in reducing emotional and behavioral problems of siblings. Adolescent siblings have responded best when they have been given some control over the direction of the sessions, including types of activities they prefer, specific topics for discussion, and the length of time the group spends on any given topic or activity. Through the experience of running groups with adolescents who have siblings with cancer, we have found that a clear description of expectations, group ‘‘rules’’ developed by the participants, and shared responsibility between the adolescents and the therapists for the topics that are discussed give adolescents a sense of group ownership, control, and belonging, and increase active responsibility for their attendance and participation. Social skills training program for pediatric brain tumor survivors. Recently, our team developed a social skills training program for brain tumor survivors. The program targets social skills that were identified in the literature as problematic for this population, and were confirmed by parents and children as areas of concern. The following social skills are addressed: social initiation and friendship making, cooperation, managing teasing and bullying, conflict resolution, empathy, and assertion. Participants were identified through a research study as experiencing poor social skills. Currently, systematic evaluation of this program is in progress. Two groups have been run so far with 8 of the participants being teenagers. Initial verbal feedback from teenage participants in this group and their parents has been very positive; lasting friendships among teens were established; and some improvements in the social skills of the participants (e.g., initiating contact with friends, self-asserting at school with belonging) were reported by teens and parents. From the therapists’ log, it appeared that teens in the program seemed to respond best to the structured elements of the program when they had a say in the format of the sessions. Informal discussion within sessions provided opportunities to talk about issues that were stressful in their lives. This speaks to the importance of providing more opportunities for informal dis-
cussions and the need to encourage adolescents’ active participation.
The group intervention for teens with cancer program The GITCP is a group intervention program for adolescents treated for cancer aimed at promoting normal social and emotional development and psychosocial adjustment. The program combines opportunities for informal discussions, problem-solving around their every-day lives, socializing and social skills building while engaged in fun and creative activities. Adolescents who are currently 13–18 years old, were diagnosed with cancer between the age of 11 and 18 years, are medically stable, currently on treatment, or have successfully completed treatment, residing within 100 km of the hospital, and are fluent in English are invited to participate in the program. Adolescents who are currently in palliative treatment or who have a developmental or neurological disorder that impedes ability to communicate in a group are excluded. The specific goals of the GITCP are to facilitate mutual support and friendship among teens, to promote the social and emotional adaptation of participants, to teach participants social and coping skills that are generalizable to their own day-to-day lives, to empower teens to ‘‘speak up,’’ and to have fun as they engage in creative activities. The program consists of 8 consecutive weekly sessions of 2 h each. A detailed treatment manual is being developed, which will serve as the treatment protocol for the group program. Given that the focus of the group is to prevent or ameliorate psychosocial maladjustment, the major content areas comprise informal discussion to share their experiences, drama improvisation, creating a piece of art (e.g., wood carving), social skills (building and maintaining friendships, conflict resolution, managing teasing and bullying, assertion), and planning social activities. Pilot-testing the feasibility of this intervention program is in progress, using 2 pre- and 2 post- intervention evaluation and standardized questionnaires to measure behavior, anxiety, and depression symptoms, social skills, and social support process log completed by the therapists at the end of each session, and a satisfaction questionnaire completed by participants at the end of the program are also part of the re-evaluation. The log describes the group activities as they occur and any significant events during the sessions. Although quantitative results are not available, the enthusiasm of participants and efforts of families to ensure that the teens attend the program, as well as the positive comments by parents and teens, suggest that the program is on the right track. On the other side, this pilot study is also beginning to identify unique challenges when
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working with very sick adolescents who are undergoing chemotherapy or radiation treatment, namely fatigue, neutropenia, and other side effects that often prevent group participation. Clearly, the use of quantitative and qualitative data gathering techniques when investigating the effectiveness of psychosocial interventions aimed at improving the overall well-being of adolescents who are treated for cancer can only enrich our understanding of the effectiveness of these interventions.
The Experience at the Northeastern Ontario Regional Cancer Centre, Sudbury, Ontario This section of the paper will review 1) the history of the pediatric oncology program at a satellite center in northeastern Ontario, 2) the process of establishing a therapeutic support group for teens and young adults who have been diagnosed and treated for cancer, and 3) the evolution of an annual expressive arts retreat for youth who have experienced a cancer diagnosis. History of the pediatric oncology program northeastern Ontario The adult oncology program in northeastern Ontario commenced in 1986. By 1987, the need for a pediatric oncology program was identified and the program was established, with a primary nurse providing the delivery of pediatric chemotherapy. Between 1987 and 1989, 31 new patients from northeastern Ontario were seen in the pediatric program. In 1990, the pediatric primary nurse and a newly hired social worker assigned to the pediatric oncology population began to meet monthly to address the medical and psychosocial issues experienced by patients and their families. These issues included the complexity of treatments, isolation, distance from the treatment center, sibling needs, and financial challenges. Between 1990 and 1997, 58 new patients were seen at the Northeastern Ontario (NEO) Regional Cancer Centre in Sudbury. With the increase of patient referrals in NEO, the collaboration between the primary nurse and social worker was increasingly important to ensure comprehensive service for this population. In 1993, the primary nurse and social worker presented Interplay: Utilizing Existing Resources25 to the Pediatric Oncology Group of Ontario (POGO)’s nursing conference. In 1995, the position of a Pediatric Interlink Nurse for the Northeast was developed. By 1998, the Northeastern Ontario Regional Cancer Centre became an official POGO satellite, dedicating a pediatrician and primary nurse to this program. The supportive care program continued to provide psychosocial and nutrition services to this population and a pediatric resource team (pediatrician, primary nurse, Interlink nurse, social worker, and dietitian) was formalized and met monthly. The number of new patient
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referrals between 1998 and September 2003 was 70. With the increase in patient referrals came an increase in the need for patient services.
Development of the teens with cancer support group In response to the need identified by a mother for a teen support group (February 1997), the Supportive Care and the Pediatric Interlink Programs at the Northeastern Ontario Regional Cancer Centre in Sudbury, Ontario combined resources to respond and initiated the monthly Get Together for Teens with Cancer Support Group. The development of this group is supported by Neville’s26 report that teens diagnosed with cancer wonder if their thoughts and feelings are common or bizarre and abnormal, and Hustins’ suggestion that ‘‘facilitating healthy coping during the crisis of treatment is achieved by group members sharing common feelings and concerns, problem solving, and facilitators encouraging school and social networks to decrease isolation.’’27 The main purpose for the Teens with Cancer Support Group was to provide an opportunity for teens and young adults to share experiences with each other once per month in a professionally facilitated and supportive environment. The cofacilitators for the group included the Pediatric Interlink Nurse, whose role included the clarification of medical information, and the social worker, whose role included addressing the psychosocial issues associated with teen cancer diagnosis. The social worker had previous experience in facilitating therapeutic support groups for this age group. Based on this previous experience, the guidelines for group participation included non-judgment of others in the group, confidentiality of information, an exit discussion with one of the group facilitators if a member chose not to return to the group. There was no formal agenda; however, the purpose of the group was clearly to discuss the teens’ experiences and the impact of cancer diagnosis and treatment. Fifty-four monthly meetings were held between October 1997 and June 2003 with an average of 9 meetings held per year. Fifteen teens attended in total over this period (4 males and 11 females). The age range for first meeting attendance was between 12 and 18 years (mean age 14 years). The age range for last meeting attendance was between 13 and 22 years (mean age 17 years). One youth died as a result of progressive disease at the age of 18 years. She had joined the group at the age of 15 years. The development of the annual expressive arts retreat for teens and young adults diagnosed with cancer In early 2000, a group member requested the opportunity for the group to meet outside of the cancer
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center for a more intensive support group experience over an extensive period of time. An annual Expressive Arts Retreat was developed and has been offered to teen and young adult cancer patients in northeastern Ontario since 2000. Brian Nichols, an expressivearts therapist, describes the goal of expressive-arts therapy as ‘‘to increase personal insight into our current feelings and behaviors and to accept who we are in relationship to our past while glimpsing who we have the potential to become. . . . The products or pieces of work that we create allow us to meditate or think about and to share or explore with others the many possible meanings to us of the work’’ (unpublished data). This context has provided participants with the opportunity to meet in a nonclinical setting for the purpose of understanding the impact of a cancer diagnosis and its treatment on oneself, one’s family, and significant others. The annual Expressive Arts Retreat is facilitated by a certified play therapist and cofacilitated by the Pediatric Interlink Nurse and social worker who work with the youth throughout the year. Over a period of 4 annual retreats (2000–2003), a total of 17 participants have attended. They have ranged in age from 13 to 22 years (mean age 16 years). Four participants, resident outside of the Greater City of Sudbury, had no previous involvement in the monthly Get Together for Teens with Cancer Support Group. This extension of specialized support to youth in northeastern Ontario has been critical in addressing issues of isolation. The evaluation processes included client satisfaction questionnaires completed on the last day of retreat, oral summation and wrap up at end of retreat, facilitators’ evaluation (Expressive Arts Getaway Facilitators’ Fieldnotes), and feedback from parents. Participants identified the opportunity for self-knowledge, learning about self through others and through expressive arts activities as therapeutic outcomes. Teens have articulated being able to look at the cancer experience in a different way; realized that they were not alone; were able to make new friends; and reported a perception that others cared. Participants also reported that although this was serious work, it was conducted with opportunity for fun. In follow-up discussions, both participants and their parents reported that they were able to realize benefits beyond the retreat setting, (i.e. continuation of expressive arts strategies for managing stress, self awareness, etc.). The Northeastern Ontario Regional Cancer Centre has had great success in delivering supportive care services to teens and youth of northeastern Ontario through the Get Together for Teens with Cancer Support Group since 1997 and the Annual Expressive Arts Retreat since 2000. There has been much positive feed-
back from the participants and facilitators. Changes have been necessary to enable these programs to grow, be strengthened, and reach more adolescents from northeastern Ontario. After working with teens who are treated for cancer from northeastern Ontario, our experience can best be expressed by a quote from Hustins27: ‘‘To overcome successfully the challenges of dealing with a life-threatening diagnosis such as cancer, the adolescent needs to find meaning in the experience. He or she must set realistic goals for him or herself. Perhaps the most meaningful experience of all is to support other adolescents with cancer in treatment.’’
DISCUSSION This manuscript describes 2 different programs that were developed independently to address the needs of adolescents who were treated for cancer in 2 very different geographic regions in the province of Ontario. The Group Intervention for Teens with Cancer Program consists of 8 sessions, 2 h each, led by 2 trained therapists (social work and psychology background). The effectiveness of the program is being systematically evaluated using a pre- and post- intervention design and standardized questionnaires as well as satisfaction questionnaire and process log of each session. The intervention includes informal discussions of thoughts and feelings about the cancer experience, building and maintaining friendships, creative activities, problem solving, and focuses on giving teens the opportunity to have fun. Pilot testing is underway, and preliminary observations and reports are encouraging. The Get Together for Teens with Cancer Support Group at the northeastern Ontario Regional Cancer Centre is an open group, offered monthly throughout the year. It is cofacilitated by a social worker and a nurse, both experienced in pediatric oncology. The annual Expressive Arts Retreat is a venue to provide intensive exploration of the psychosocial impact of the cancer diagnosis for members of the monthly support group as well as teens and young adults residing in rural northeastern Ontario. These programs have confirmed their value through reports from group participants, their parents, and professional facilitators. The self-report and behaviors of group participants demonstrate the carry-over of content from these clinical programs into daily life. Although the programs described here are different in a number of ways, they have in common the recognition of the great needs of adolescents and young adults who are treated for cancer, for normalizing their lives in the face of severe challenges. The 2 programs were developed based on the unique geography and
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other contextually related characteristics to identify the needs of the young people in their respective regional communities. Both programs continue to evolve and address the ever-changing needs of this high-risk population.
REFERENCES 1.
Bauld C, Anderson V, Arnold J. Psychosocial aspects of adolescent cancer survival. J Paediatr Child Health. 1998;34:120– 126. 2. Bleyer A. Older adolescents with cancer in North America: deficits in outcome and research. Pediatr Clin North Am. 2002;49:1027–1042. 3. Ettinger RS, Heiney SP. Cancer in adolescents and young adults. Cancer. 1993;71:3276–3280. 4. List M, Ritter-Sterr C, Lansky S. Enhancing the adjustment of long-term survivors: Early findings of a school intervention study. In: Green DM, D’Angio GJ, eds. Late Effects of Treatment for Childhood Cancer. New York: Wiley-Liss; 1992:159–164. 5. Madan-Swain A, Brown RT, Foster MA, et al. Identity in adolescent survivors of childhood cancer. J Pediatr Psychol. 2000; 25:105–115. 6. Rechner M. Adolescents with cancer: Getting on with life. J Pediatr Oncol Nurs. 1990;7:139–144. 7. Heiney SP, Ruffin J, Ettinger RS, Ettinger S. The effects of group therapy on adolescents with cancer. J Assoc Pediatr Oncol Nurses. 1988;5:20–24. 8. Barrera M, Wayland LA, D’Agostino N, et al. Developmental differences in psychological adjustment and health related quality of life in pediatric cancer patients. Child Health Care. 2003;12:215–232. 9. LeBaron S, Zeltzer PM, Zeltzer LK, Scott SE, Marline AE. Assessment of quality of survival in children with medulloblastoma and cerebellar astrocytoma. Cancer. 1988;62:1215–1222. 10. Mulhern RK, Hancock J, Fairclough D, Kun L. Neuropsychological status of children treated for brain tumors: A critical review and integrative analysis. Med Pediatr Oncol. 1992;20: 181–191. 11. Pendley JS, Dahlquist L, Dreyer Z. Body image and psychosocial adjustment in adolescent cancer survivors. J Pediatr Psychol. 1997;22:29–43.
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12. Baider L, De-Nour AK. Group therapy with adolescent cancer patients. J Adolesc Health Care. 1989;10:35–38. 13. Byrne CM, Stockwell M, Gudelis S. Adolescent support groups in oncology. Oncol Nurs Forum. 1984;11:36–40. 14. Clark HB, Ichinose CK, Meseck-Bushey S, et al. Peer support group for adolescents with cancer. Child Health Care. 1992; 21:233–238. 15. Heiney SP, Wells LM, Swygert E, Coleman B. Psychosocial support program for adolescents with cancer and their parents. J Pediatr Oncol Nurs. 1990;7:75–76. 16. Keefe K, Berndt TJ. Relations of friendship quality to selfesteem in early adolescence. J Early Adolesc. 1996;16:110–129. 17. Kendall PC. Child and Adolescent Therapy: Cognitive-Behavioural Procedures. New York: Guilford Press; 2000. 18. Varni JW, Katz ER, Colegrove R, Dolgin M. The impact of social skills training on the adjustment of children with newly diagnosed cancer. J Pediatr Psychol. 1993;18:751–767. 19. Bandura A. Self-Efficacy in Changing Societies. Cambridge: Cambridge University Press; 1995. 20. Barrera M, Chung JYY, Greenberg M, Fleming C. Preliminary investigation of a group intervention for siblings of pediatric cancer patients. Child Health Care. 2002;31:131–142. 21. Barrera M, Chung JYY, Fleming CF. Group intervention for siblings of pediatric cancer patients. J. Psychosoc Oncol. 2004; 22:75–88. 22. Barrera M, Fleming C, Pilchuk C, Fung K, Roberts R. A needs assessment of adolescents in the hematology/oncology program of a large institution. Poster presented at the Pediatric Oncology Group of Ontario (POGO) Multi-disciplinary Symposium, Toronto, Ontario; 2002. 23. Barrera M, Fleming CF, D’Agostino NM, Al-Khalili A. A Social Skills Training Program for Survivors of Pediatric Brain Tumours. Toronto, Ontario: The Hospital for Sick Children; 2005. 24. Krueger RA. Focus groups. A Practical Guide for Applied Research. 2nd edn. Thousand Oaks, CA: Sage; 1994. 25. Damore-Petingola S, Mayer J. Interplay: Utilizing existing resources. Poster presented at the Pediatric Oncology Group of Ontario (POGO) Nursing Conference, Toronto, Ontario; 1993. 26. Neville KL. Mature Beyond Their Years: The Impact of Cancer on Adolescent Development. Pittsburgh, PA: Oncology Nursing Press; 2000. 27. Hustins K. Newfound friends: A support group for adolescents with cancer. Can Oncol Nurs J. 1993;3:11–13.
