563935
research-article2015
JPOXXX10.1177/1043454214563935Journal of Pediatric Oncology NursingIshibashi et al.
Article
Psychosocial Strength Enhancing Resilience in Adolescents and Young Adults With Cancer
Journal of Pediatric Oncology Nursing 1–10 © 2015 by Association of Pediatric Hematology/Oncology Nurses Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1043454214563935 jpo.sagepub.com
Akiko Ishibashi, MN, RN1, Jun Okamura, MHS1, Reiko Ueda, DMSc, RN2, Shosuke Sunami, MD, PhD3, Ryoji Kobayashi, MD, PhD4, and Junko Ogawa, DNSc, RN5
Abstract The purpose of this study was to explore ways of enhancing psychosocial strengths in newly diagnosed and relapsed adolescents and young adults (AYAs) to improve their resilience. A descriptive case study was used. The adolescent resilience model (ARM) and the self-sustaining process model were applied as theories. The data were analyzed using pattern-matching logic. Semistructured interviews were conducted with 18 patients aged 12 to 24 years and discharged within 10 years. We found that the newly diagnosed and the relapsing AYAs developed the 5 strength factors of the ARM during and after treatment. Whether the individuals cultivated a positive attitude and sense of purpose early or late, the AYAs developed resilience eventually. A positive attitude and sense of purpose during the early phase of care may be essential for improving resilience. The AYAs benefited from the support of their parents, friends, and previous experience. Individualized support and social resources may be important to develop these strengths. Further research is needed to develop strengths and improve resilience in newly diagnosed AYAs. Keywords resilience, strengths, positive attitude, purpose, adolescents and young adults with cancer
Background Although adolescents and young adults (AYAs) with cancer are at risk for developing cognitive, emotional, and behavioral problems (Shepherd & Woodgate, 2010), they strongly display resilience (Haase, 2004; Teall, Barrera, Barr, Silva, & Greenberg, 2013). Resilience is the process of identifying and developing resources to manage stressors to gain positive outcomes from the experience (Haase, 2004). Adolescents become stronger by successfully coping with stress; this ability serves to promote protective processes and ultimately enhances resilience (Rutter, 1990). Family and social protective factors may positively affect the outcomes of adolescents who have cancer (Haase, Heiney, Ruccione, & Stutzer, 1999). Adolescents with cancer displayed physical distress during treatment and psychosocial distress after treatment (Enskär & von Essen, 2007). However, they exhibited a high level of optimism and openness 1 month after bone cancer therapy (Smorti, 2012) and cognitive and problemoriented coping during therapy (Wu, Sheen, Shu, Chang, & Hsiao, 2013). Survivors of leukemia exhibited more positive protective factors, greater positive resilience, and
lower illness-related scores compared with brain cancer survivors (Chou & Hunter, 2009). Adolescents with cancer require interventions to gain strength and increase resilience. The adolescent resilience model was developed to guide interventions for adolescents with cancer and their family (Haase, 2004). Studies of massage and humor therapy (Phipps et al., 2012), the viewing of a therapeutic music video (Burns, Robb, & Haase, 2009), and the Resilience Education Program for sun safety (Mays, Black, Mosher, Shad, & Tercyak, 2011) for adolescent survivors were reported to lead to positive outcomes. The purpose of this study was to explore the 1
The Japanese Red Cross Kyushu International College of Nursing, Munakata, Fukuoka, Japan 2 Okinawa Prefectural College of Nursing, Kiyoseshi, Tokyo, Japan 3 The Japanese Red Cross Narita Hospital, Naritashi, Tiba, Japan 4 Sapporo Hokuyu Hospital, Siroishi-ku, Sapporo, Japan 5 Shukutoku University, Chuo-ku, Chiba-city, Japan Corresponding Author: Akiko Ishibashi, The Japanese Red Cross Kyushu International College of Nursing, 1-1 Asty, Munakata, Fukuoka 811-4157, Japan. Email: [email protected]
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psychosocial strengths that enhance resilience in newly diagnosed and relapsed AYAs with cancer.
Theoretical Framework The adolescent resilience model (ARM) is a theoretical model that identifies the factors that influence outcomes associated with resilience (Hinds & Haase, 2003). The ARM includes 6 types of factors: illness-related risk, individual risk, family protective, social protective, individual protective, and outcome (Haase, 2004). Among these factors, our study focused on individual risk factors, individual protective factors, and outcome factors, such as resilience. Strengthening protective factors or diminishing risks influence the outcomes and the quality of life. The outcome factors include self-esteem, self-transcendence, and confidence (Haase, 2004). Generally, the outcome factors consist of a positive attitude, a purpose, connections with friends, confidence, and more knowledge about life. The self-sustaining process model (Hinds & Martin, 1988) was developed inductively with adolescent cancer patients to help them achieve and maintain hopefulness and resilience during their experiences (Hinds & Haase, 2003). For adolescents with cancer, it is important to know that particular strategies are more effective at specific times during treatment (Hinds & Martin, 1988). The self-sustaining process model consists of the following 4 sequential phases. The first phase (T1) is cognitive discomfort, which is defined as the degree to which mental uneasiness is related to negative or disruptive thoughts. It occurs immediately after the adolescents become aware of their illness. The second phase (T2) is distraction, which is defined as the degree to which the negative thoughts are replaced with positive thoughts and conditions through cognitive and behavioral efforts. The third phase (T3) is cognitive comfort, which refers to periods of comfort and the lifting of spirits during the course of the illness. In this phase, the adolescents believe that a positive future exists for themselves or others. The last phase (T4) is personal competence, which refers to the adolescent’s self-perception of being resilient, resourceful, and adaptable in the face of the illness (Hinds & Martin, 1988). In this study, these 4 phases were renamed diagnosis (T1), start of therapy (T2), end of therapy (T3), and completion of therapy (T4). The outcome factors were explored as a means of developing the psychosocial strengths of the participants during the phases.
Method A descriptive case study was employed in this research. According to Yin (2003), case studies can be conducted alone or in combination with additional methods such as exploratory, descriptive, and explanatory case studies. A
mixed-methods design uses the same research questions to collect complementary data and to conduct counterpart analysis. A descriptive case study offers a complete description of a phenomenon within its context. Moreover, theories can be important for descriptive case studies that involve the scope and depth of the case being described. Additionally, the analysis can use pattern-matching techniques (Yin, 2003). Pattern-matching logic that compares several pieces of information from the same case to a theoretical proposition was used for the analysis. Each case study and unit of analysis should be similar to the theoretical proposition or should differ in clearly defined ways. Internal validity is supported if all the patterns fit the proposition. However, if the patterns do not fit, the proposition is not accepted (Yin, 2006). The self-sustaining process model served as the theoretical proposition and a guide to define the cases and units of analysis. A semistructured interview guide (Weekes & Kagan, 1994) was used to elicit the meanings and perceptions of the adolescents’ pre- and posttherapy experience and coping strategies. The coping strategies were connected to resilience (Rutter, 1990). The semistructured interview guide was modified to be appropriate for the population in Japan (Ueda & Ishibashi, 2002). In this study, the interviewee was asked about the cancer experience, including social support, in 4 phases.
Participants The participants in this study were selected from a sample of AYAs with cancer from 3 agencies in Japan. The inclusion criteria were as follows: (1) diagnosis of cancer, (2) 12 to 25 years old, (3) outpatient status within 10 years, (4) informed or having received an explanation of their disease, and (5) the ability to understand and participate in the interviews. Japan ranks low in terms of disclosing cancer diagnoses to child cancer patients (Mayer et al., 2005). Therefore, our sampling attempted to encompass a wide age range similar to the distribution of informed cancer patients by age in Japan. Moreover, the survivorship rates are 97% within 10 years and 94% within 20 years after diagnosis (Ishida, 2011). Therefore, a wide range of outpatients were studied.
Procedure A university-based ethical review committee approved this study. Institutional review board approval for the protection of human subjects was granted by all 3 agencies. Potential participants were identified from the patient roster of the list of scheduled visits to the outpatient clinic. The first author met the potential participants during visits to the clinic. Once they expressed an interest in participating, informed consent was obtained from the
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Ishibashi et al. Table 1. Demographic Characteristics of the AYAs (n = 18). Characteristic
Newly diagnosed AYAsa
Relapsing AYAsb
2 8 2
1 2 1 1 1
6 6
5 1
6 2 2 2
4 2
9 3
3c 3c
3 3 2 2 2
3c 1c 1c 1c
6 6
4 2
Age at interview (years) 12 13-15 16-18 19-21 22-24 Gender Male Female Diagnosis ALL AML NHL Other soft tissue cancers Age at diagnosis (years) 6-12 13-18 Time since discharge (months) >5 6-12 13-18 19-24 25< Informed friends of cancer Yes No
Abbreviations: AYAs, adolescents and young adults; ALL, acute lymphoblastic leukemia; AML, acute myelogenous leukemia; NHL, non-Hodgkin’s lymphoma. a First remission. bSecond remission. cRecurrence.
AYAs with cancer. It was also acquired from the parents, and assent was obtained from the adolescents younger than 16 years of age.
Data Collection We conducted individual interviews between October 2008 and August 2011. The interview began with the question “Will you tell me why you visited today?” To conform to Japanese cultural conventions, the interviewer used the term disease rather than cancer during the interview. While the participants waited for the results of a blood test, the interviews with the AYAs with cancer were conducted in a private room by the first author and were audio recorded and transcribed verbatim; these interviews lasted between 30 and 50 minutes.
Data Analysis Rigorous application of coding techniques helped maintain the reliability and validity of the analysis (Pope &
Mays, 2000). The proposition and data were compared to apply the pattern-matching logic. First, the description was read to obtain a sense of the psychosocial strengths, and meaningful items were identified. Second, these meaning units were examined and then transformed into the 5 strength factors of ARM: positive attitude, purpose, connection with friends, confidence, and more knowledge about life. Third, the factors were split into cognitive discomfort, distraction, cognitive comfort, and personal competence. Each category included the strength factors. The distraction and cognitive discomfort categories were compounded because of the patients’ inability to clearly describe their experiences between these phases. The cognitive comfort and personal competence categories were designed to be flexible and nonlinear (see Table 1). Next, the categories were separated and placed in the (T1), (T2), (T3), and (T4) phases. Fifth, the factors of data were compared to the 5 factors of the proposition and examined for fitting or not fitting the proposition. Finally, the pattern took shape. These processes were replicated in the following case.
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Findings A total of 11 males and 7 females aged 12 to 24 years participated in the study; they had an outpatient status for 4 months to 9 years. Of these, 12 were newly diagnosed and 6 had experienced relapses. The diagnoses included acute lymphoblastic leukemia, acute myelogenous leukemia, and non-Hodgkin’s lymphoma. Six newly diagnosed and 5 relapsing AYAs informed their friends of the cancer. Table 1 shows the demographic characteristics of these individuals. Two main themes emerged from the interviews: sloping and bumpy paths for the newly diagnosed AYAs and upright and flat paths for the relapsing AYAs. Table 2 summarizes the 5 strength factors (positive attitude, purpose, connection with friends, confidence, and more knowledge about life) in the 4 phases (cognitive discomfort, distraction, cognitive comfort, and personal competence) for the newly diagnosed adolescents and those experiencing relapses. Figure 1 displays the graphic patterns of results from the cases in Table 2. The average of the graphical patterns for both groups in Figure 1 is depicted in Figure 2, which shows the temporal pattern of the development of psychosocial strengths in newly diagnosed and relapsing AYAs.
Theme: Sloping and Bumpy Paths Newly diagnosed AYAs encountered sloping and bumpy paths in that the strengths of these participants oscillated between T2 and T3, and the strengths rapidly increased in T4 (see Figure 2). The path included the 3 patterns: patients 1, 3, 5, 13, and 14; 7, 11, 12, 15, 17, and 18; and 10 (see Figure 1). For patients 1, 3, 5, 13, and 14, the strengths gradually developed until T1 and T2, decreased in T3, and increased in T4. Patients 7, 11, 12, 15, 17, and 18 showed gradually increasing strengths until the T1 phase, becoming parallel in T2 and T3, and rising in T4. For patient 10, the strengths gradually improved and continued in T1, decreased in T2, and escalated in T3. These patterns exhibited only minor differences; therefore, their descriptions were displayed together. T1. The worries of the newly diagnosed AYAs at the time of diagnosis involved the possibility of dying from cancer, not going to school, and losing their hair. With support from their mothers, these patients expressed a positive attitude. A 15-year-old boy (patient 7) expressed, “I was a bit shocked because I had to have a lot of painful tests. . . . Mother said it’s OK and you would recover.” A 14-year-old girl (patient 5) said, “It must have been very hard . . . mother said that everything would be all right. If I didn’t fight, I wouldn’t get better. I thought I would try my best.” A 17-year-old female (patient 17) and a 12-yearold girl (patient 10) did not receive an explanation of their
disease by parents but knew they needed to stay in the hospital for a long period. Both of them decided to receive the treatment despite their doubt about what was happening to them. T2 and T3. During the inpatient period, when the newly diagnosed AYAs underwent painful procedures and loss of hair, they maintained a positive attitude and a sense of purpose. A boy (patient 7) said, “When things were hard, I just tried to think that it (illness) wasn’t bad.” Despite a lack of contact with friends, the patients maintained their hopes regarding reentering school. A 14-year-old girl (patient 15) said that she wanted to attend an enrollment ceremony of a junior high school with her friends, so she wanted to finish her therapy quickly. More knowledge about life was exhibited. A 15-year-old girl (patient 1) stated the value of living, “I shouldn’t have died because I knew a student who died from cancer in this hospital.” In the near-discharge period, the participants who had a positive attitude and a sense of purpose tried to complete their missed class work. A girl (patient 1) explained, “I studied English as hard as possible by myself. . . . I didn’t want to be behind in class.” A 17-year-old female (patient 17) who had purpose expressed, “The people who worked here were kind to me, so I wanted to have a job interacting with people.” An 18-year-old male (patient 3) who completed the therapy and developed confidence stated, “I did it finally. I gained confidence when I was told about my discharge.” T4. The hope of the newly diagnosed AYAs during the outpatient period was recovery. A boy (patient 7) articulated it as a sense of purpose, “I was told that my blood test was not good . . . but I desire to recover.” Their positive attitudes and sense of purpose were focused on their studies and catching up as much as possible. Hopes of friendship were finally realized. Despite their concern about returning to school after losing their hair, the adolescents reconnected with their friends, which led them to gain confidence. A girl (patient 1) explained that she was getting used to going to school with very little hair because her classmates told her that her hair was beautiful. Friends who supported the patients were informed about the disease. A 13-year-old boy (patient 14) described, “When I told my friend about my cancer, he said that you had a hard time. He talks to me with a usual manner.” A 13-year-old girl (patient 13) who gained more knowledge about life stated that she realized that everyday life was very important.
Theme: Upright and Flat Paths The relapsing AYAs traversed upright and flat paths during their encounters with cancer. Their strengths rapidly developed in T1 and continued to develop until reaching
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Cognitive comfort/Personal competence
+ + +
+ + + + + +
SF + +
+ + SO SP + + SO + SF + + + SP + + SP + SP + SO SP + + + + SF + SF + SF + + + + SF + SF + SP SF + SP SF + SP + + SP SF + +
SF + +
SF + SF + SF + SF + SO SF + SF +
T2
+ + +
+ + + + SO + +
SO +
+
+
+ + + SF + + +
+ + + SP + + + + +
SO + +
+ + + + + +
+ + + + + SF + +
SP +
SF + + + SF + SO + SF +
T3
+ + + +
+
+ +
+ + +
SO + SF SO + + + + SP SF + SP + + + + + SO + + + SP + SF + SP SF + +
+ SO + + + SP + + + + + + + + SP + + + +
SF + +
SO + SF + SF + + SO + SF + SF + SF + SO + SF SO + SF + SF + SF + SF + SF + SF +
SF + SF +
T4
+ + + + + +
SF + SF + + SF +
SO + SF + SF + SO +
+ +
+ + + + + + + + + + SO + +
+ SF SO +
Abbreviations: AYAs, adolescents and young adults; SF, support from friends; SP, support from parents; SO, support from others. a + = the adolescents and young adults who had the same experiences for the 5 strength factors in terms of the corresponding strengths. SF, SP, SO = the adolescents with similar support resources. The categories of cognitive discomfort and distraction and cognitive comfort and personal competence categories were combined. T1 = diagnosis phase; T2 = start therapy phase; T3 = end therapy phase; and T4 = completion of therapy phase.
+ + SP + SP + + +
T1
More More KnowMore Connection Connection More Knowledge Positive ledge About Knowledge Positive With With Knowledge Positive Positive Connection Life Attitude Purpose Confidence About Life Attitude Purpose With Friends Confidence About Life Attitude Purpose Friends Confidence About Life Attitude Purpose Friends Confidence
Cognitive Discomfort / Distraction
1 SO SP + Cases Newly Diagnosed 3 SP + AYAs 5 SP + 13 SP + 14 SF + 7 SP + 11 SO + 12 SO SP + 15 SO SP + 17 + 18 SP + 10 + Relapsing 2 + AYAs 4 + 8 SP + 6 SP + 9 + 16 SP +
Time Process
Strength Factors
Categories
Table 2. Psychosocial Strengths in Newly Diagnosed and Relapsing Adolescents and Young Adults.a
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Psychosocial Strengths
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㻢㻘㻌㻥㻘㻌㻝㻢
5
1, 2, 3, 4, 6, 7, 8, 9, 12, 13, 14, 16, 17
2, 4, 8
5, 11, 15, 18
6, 9, 16
4
1. 14
3
10
7, 11, 12, 15, 17, 18
2
10
3, 5, 13
1 T1
T2 to T3
T4
Prosess of Time
Figure 1. Patterns of strength development in newly diagnosed and relapsing adolescents and young adults (AYAs).a a
Psychosocial Strengths
The X-axis displays the process of time. The Y-axis shows the results of strengths. It is shown by the numbers of their strengths. The developing strengths are indicated by lines (thin lines = the newly diagnosed AYAs; broken lines = the relapsing AYAs). The numbering of the lines shows the cases.
Relapsing AYAs
Newly Diagnosed AYAs
T1
T2 to T3
T4
Process of Time
Figure 2. Temporal pattern of the development of psychosocial strengths in newly diagnosed and relapsing adolescents and young adults (AYAs).
a plateau in T4 (see Figure 2). Patients 2, 4, and 8 displayed strengths that rapidly increased in T1 up to T2 and continued in T3 and T4. Patients 6, 9, and 16 showed strength that quickly rose in T1 and up to T2 and gradually increased in T3 and T4. Their strengths were consistent with 2 patterns: patients 2, 4, and 8; and 6, 9, and 16 (see Figure 1). The 2 groups were exhibited together because there were only minor differences. T1. The initial reactions of the relapsing AYAs to their diagnosis included desires to leave the hospital as quickly as possible and to eliminate overly serious thoughts. They were concerned to receive the therapy and fight cancer by themselves or with parents until they got a good result. A 17-year-old male (patient 4) said, “I wanted a complete recovery. . . . I wanted to receive treatment and get out.” The patients manifested their increased confidence by being willing to endure the therapy. A male (patient 4) stated, “I realized at the time that I had never fallen down
from my illness. I didn’t feel I was in danger. If I needed a transplant, I would do it.” The adolescents gained more knowledge about life. A 14-year-old girl (patient 2) said about her hair, “I don’t feel anything. . . . Having very short hair is a fashion.” A 13-year-old boy (patient 8) and a 12-year-old boy (patient 6) were well supported by their parents when they were diagnosed at age 10 and 9 years, respectively. The boy (Patient 6) showed a positive attitude, At the time, I told my parents that I didn’t want to receive a painful test. They listened to me calmly. After that, I could think that I was a patient and would play a friend in the same ward after the test.
T2 and T3. As inpatients, the participants exhibited positive attitudes and a sense of purpose. They developed goals, such as developing a musical talent and achieving a complete recovery, to provide them with the motivation to withstand the therapy. A girl (patient 2) said, “I thought about my purpose and the activities I wanted to do after discharge.” A 13-year-old boy (patient 8) stated, “I thought that I could stand it (relapse) until I was able to go home for a night.” The patients acquired a sense of connection and support from their friends. A 21-year-old male (patient 16) described, “When I called my friends to listen to something about outside the hospital, they made me feel good.” The patients showed their confidence by informing their friends of relapse, receiving treatment with the goal of recovery, and accepting their hair loss. A boy (patient 8) expressed, “I was 10 years old when they told me about the disease so I didn’t think anything about it (losing hair).” More knowledge about life was evident in their acceptance of their therapy and the results. A
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Ishibashi et al. 24-year-old male (patient 9) said, “If I am not in a good condition, I will do something I have wanted to do.” The positive attitude and sense of purpose during the near-discharge period focused on returning to school, preparing a study plan, and receiving stem-cell transplantation. Ongoing connections with friends allowed the adolescents to have conversations with their peers about the near future. A girl (patient 2) said that she often called her friends and talked about their plans after discharge. A boy (patient 8) said, “I prepared to be back as a member (baseball). . . . I called a member about this.” A 12-yearold boy (patient 6) who acquired confidence during the course of treatment explained, “At first, it was difficult to be inside all the time, so I made plans to study and play with friends all day long.” The patients also acquired more knowledge about life. As expressed by a boy (patient 8), “If I can go through this (cancer experience) I can go through anything.” They also thought of helping people. A male (patient 16) said, “I could understand how hard an experience like cancer is. So, I had to think about helping people with cancer.” T4. The positive attitude and sense of purpose of the adolescents helped them achieve their new goals as outpatients. New goals were developed, including beginning dance lessons, joining a baseball team, and receiving the therapy again. One male (patient 4) who received a poor prognosis described, “I am thinking of receiving stem cell transplantation again.” The new goals also included going to school and having a job that entailed helping people. A male (patient 16) said, “I had cancer, so I want to have a job related to my experience for people in the near future.” The adolescents had connections with their friends and received ample support from them when they were informed of their disease. A boy (patient 8) said, “I informed my friends, so they explained the reason for wearing a hat to some students instead of me.” A male (patient 9) who ran every morning with family members to join a baseball team described, “My friends run the grand together when I was training my muscles.” The confidence allowed the patients to inform their friends about their relapse, and they consequently developed more knowledge about life. As explained by a boy (patient 8), “When they (friends) asked me questions (about cancer), I would answer them truthfully. . . . I felt brave. I need to be more brave.” A girl (patient 2) also explained that she would be able to cope with any difficult situation in the future. A male (patient 16) stated, “I could understand how people with cancer feel. I want to support them in the future.”
Discussion The self-sustaining process model includes 4 processes for achieving competence in resolving health threats
(Hinds & Martin, 1988). The outcome factors, such as positive attitude, purpose, connection with friends, confidence, and more knowledge about life, influence resilience (Haase, 2004). Our study indicated that through the 4 processes, the psychosocial strengths enhanced resilience in AYAs with cancer. In this study, newly diagnosed AYAs found that from an initial period of life threats, the strengths gradually peaked in the outpatient phase. However, the peak line became unstable from the inpatient phase to the neardischarge phase. A positive attitude and sense of purpose in early inpatient care intensified the rest of the strengths as outpatients. In previous studies, positive attitudes helped patients cope with the therapy, prepare for returning to school, and have hope for recovery (Kyngäs et al., 2001). Dealing with cancer also forced patients to return to routine ways of life as quickly as possible (Kyngäs et al., 2001). The development of a positive attitude and a sense of purpose during the early phase may be essential for the growth of resilience. Moreover, a positive attitude and sense of purpose frequently developed with the support of parents. As previous research (Haluska, Jessee, & Nagy, 2002; Lin, Tsai, Lai, Kao, & Tsou, 2003; Wong & Chan, 2006) has reported, the belief that cancer is not fatal and the development of hope for the future in parents may beneficially affect the development of strengths in the child. Additionally, some of the newly diagnosed AYAs did not feel that parents supported them in the early phase because they did not explain their disease. This lack of communication may be influenced by Japanese culture and societal beliefs. Japanese physicians were more likely to think that a child with cancer should be told about their diagnosis only by a parent. Communication of a cancer diagnosis to a child is also influenced by the child’s age as compared to the United States (Parsons et al., 2007). According to Neil and Clarke (2010), nurses should provide health care that is appropriate and sensitive to the individual needs of each child and family. The newly diagnosed participants may have been able to develop their strengths so effectively because their friends offered them support during therapy. Support from friends is important for newly diagnosed adolescents because of their developmental stage (Stegenga & Ward-Smith, 2009). However, our participants might not have been able to easily contact their friends because of the difficulties of the first cancer treatment. Adolescent patients also require support to maintain normalcy during the early phase of the disease (Klassen et al., 2007). Additionally, adolescents with cancer need to be offered information that is focused on the illness, the treatment, and the side effects but not on the future, such as maintaining a social network of friends, emphasizing the importance of attending school, and communicating about emotional concerns (Hokkanen, Eriksson, Ahonen,
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& Salantera, 2004). Some of our newly diagnosed AYAs participants did not inform their school friends about their diagnosis. This approach may have a cultural basis in Japan (Phillips-Salimi, Haase, & Kooken, 2011). A previous study also explained that knowledge of a cancer diagnosis by friends would increase social isolation in Japan (Parsons et al., 2007). Moreover, parents may need social support to feel comfortable informing their children. A study (Scrimin et al., 2005) stated that parents of a child with cancer wanted to have support and to have hope for coping strategies. We suggest that if parents inform their children about their cancer diagnosis, the children are more willing to speak openly to their friends about their experience and to have a normal school life. AYAs with cancer who received high levels of support from their parents tended to receive high levels of support from their friends (Olson & Harder, 2011). Our relapsing AYAs demonstrated that from the initial period of diagnosis, their strengths rapidly increased in the early inpatient period and gradually reached a plateau in the outpatient period. Disease relapse causes great anxiety because of the negative memories that it evokes (Woodgate, 1999). According to the relapsing AYAs in our participants, their previous experience with cancer facilitated the rapid improvement in their strengths and their set of goals during the early stage. The relapsing AYAs formed their goals in a step-by-step manner and then achieved them. According to previous research (Haase et al., 1999; Rutter, 1993), their previous profound experiences fostered strength development. Childhood survivors also have high levels of self-esteem and a greater sense of purpose (Haase, 2004). According to a study (Hinds, Birenbaum, Pedrosa, & Pedrosa, 2002), relapsing adolescents focus on smaller parts of their situation than the entire retreatment plan. This method allows them to not be focused on their relapse, especially if they have support from friends. The coping process of the adolescents was also described as follows: (1) verbally denying the recurrence, (2) accepting the truth of the relapse within several days, (3) being positive about retreatment, (4) focusing on the beliefs of others that the cancer would finally be cured, and (5) focusing on continuing retreatment for their parents’ emotional well-being and showing respect for the parents. Additionally, our relapsing participants who were in contact with friends and informed their friends about their condition in the early stage may have thus been helped toward maintaining their school life and achieving their goals. Previous research stated that well-adapted adolescents with cancer had strong relationships with friends and peer support that protected against psychological distress (Stegenga & Ward-Smith, 2009) and helped in maintaining normalcy (Klassen et al., 2007). Some of the relapsing AYAs slightly talked about their parents. This limited discussion of parents may be attributed to seeking independence as one study
suggests (Stegenga et al., 2009). Moreover, the relapsing patients focus on more realistic topics such as everyday topics or events compared to their parents who focus on the recurrence (Hinds et al., 2002).
Limitations The following limitations may have affected the data. First, the findings from a case study should not be generalized. Second, our patient sample encompassed a wide range of outpatients with a broad age range, which may have introduced recall bias. Third, the range of inpatient therapy was large, and time since treatment was not analyzed. Finally, some interviews were stopped early because the patient took more time for blood testing. Because the interview was conducted while the participants were waiting to be examined by a physician, they were likely to be worried about their results.
Conclusions and Implications The newly diagnosed and relapsing AYAs developed 5 crucial strengths that facilitated resilience throughout the process. Whether the individuals cultivated a positive attitude and sense of purpose early or late, the AYAs with cancer reached resilience eventually. Additionally, a positive attitude and sense of purpose in early inpatient care enabled the patients to gain resilience. Moreover, the AYAs with cancer benefited from the support of their parents, the efforts of their friends to understand their experiences, and their own previous experience. We suggest that a positive attitude and sense of purpose during the early phase andsocial resources are essential for improving the strengths of newly diagnosed and relapsing AYAs. These findings should be considered in designing interventions. Education for not only AYAs with cancer but also their parents, friends, and school should include this information. The newly diagnosed AYAs also need support to maintain normalcy during the early phase of the disease. Further research related to newly diagnosed AYAs who employ fewer strength factors is needed to improve strength and resilience in adolescents with cancer. Acknowledgments The authors thank the AYAs with cancer who participated in our research. We also thank Masayo Uchida, Kazuyo Matuura, Narita Red Cross Hospital, and Sapporo Hokuyu Hospital for support of this study.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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Ishibashi et al. Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was founded by a grant-in-aid for Scientific Research of Japan.
References Burns, D. S., Robb, S. L., & Haase, J. E. (2009). Exploring the feasibility of a therapeutic music video intervention in adolescents and young adults during stem-cell transplantation. Cancer Nursing, 32(5), E8-E16. doi:10.1097/ NCC.0b013e31814802c Chou, L. N., & Hunter, A. (2009). Factors affecting quality of life in Taiwanese survivors of childhood. Journal of Advance Nursing, 65, 2130-2141. Enskär, K., & von Essen, L. (2007). Prevalence of aspects of distress, coping, support and care among adolescents and young adults undergoing and being of cancer treatment. European Journal of Oncology Nursing, 11, 400-408. Haase, J. E. (2004). The adolescent resilience model as a guide to interventions. Journal of Pediatric Oncology Nursing, 21, 289-299. Haase, J. E., Heiney, S. P., Ruccione, K. S., & Stutzer, C. (1999). Research triangulation to derive meaning-based quality-of-life theory: Adolescent resilience model and instrument development. International Journal of Cancer, 12, 125-131. Haluska, H. B., Jessee, P. O., & Nagy, M. C. (2002). Sources of social support: Adolescents with cancer. Oncology Nursing Forum, 29, 1317-1324. Hinds, P. S., Birenbaum, L. K., Pedrosa, A. M., & Pedrosa, F. (2002). Guidelines for the recurrence of pediatric cancer. Seminars in Oncology Nursing, 18(1), 50-59. Hinds, P. S., & Haase, J. E. (2003). Theory development in quality of life for children and adolescents with cancer. In C. King & P. S. Hinds (Eds.), Quality of life: From nursing and patient perspectives: Theory, research, and practice (pp. 143-168). Boston, MA: Jones & Bartlett. Hinds, P. S., & Martin, J. (1988). Hopefulness and the selfsustaining process in adolescents with cancer. Nursing Research, 37, 336-340. Hokkanen, H., Eriksson, E., Ahonen, O., & Salantera, S. (2004). Adolescents with cancer: Experience of life and how it could be made easier. Cancer Nursing, 27, 325-335. Ishida, Y. (2011). Transition issues of childhood leukemia survivors into adult care. Nursing Today, 26(3), 30-35. Klassen, A., Raina, P., Reineking, S., Dix, D., Prichard, S., & O’Donnell, M. (2007). Developing a literature base to understand the caregiving experience of children with cancer: A systematic review of factors related parental health and well-being. Supportive Care in Cancer, 15, 807-818. Kyngäs, H., Mikkonen, R., Nousiainen, E. M., Rytilahti, M., Seppänen, P., Vaattovaare, R., & Jämsä, T. (2001). Coping with the onset of cancer: Coping strategies and resources of young people with cancer. European Journal of Cancer Care, 10, 6-11. Lin, C. C., Tsai, H., Lai, Y. H., Kao, C. C., & Tsou, T. S. (2003). Changes in levels of hope after diagnosis disclosure among
Taiwanese patients with cancer. Cancer Nursing, 26, 155160. Mayer, D. K., Parsons, S. K., Terrin, N., Tighiouart, H., Jeruss, S., Nakagawa, K., . . .Saki-Craighill, S. (2005). School reentry after a cancer diagnosis: Physician attitudes about truth and information sharing. Child: Care, Health and Development, 31, 355-363. Mays, D., Black, J. D., Mosher, R. B., Shad, A. T., & Tercyak, K. P. (2011). Improving short-term sun safety practices among adolescent survivors of childhood cancer: A randomized controlled efficacy trial. Journal of Cancer Survivorship, 5, 247-254. Neil, L., & Clarke, S. (2010). Learning to live with childhood cancer: A literature review of the parental perspective. International Journal of Palliative Nursing, 16, 110-119. Olson, P. R., & Harder, I. (2011). Caring for teenagers and young adults with cancer: A grounded theory study of network-focused nursing. European Journal of Cancer Care, 15, 152-159. Parsons, S. K., Saiki-Craighill, S., Mayer, D. K., Sullivan, A. M., Jeruss, S., Terrin, N., . . .Block, S. (2007). Telling children and adolescents about their cancer diagnosis: Crosscultural comparisons between pediatric oncologists in the US and Japan. Psychosocial Oncology, 16, 60-68. Phillips-Salimi, C. R., Haase, J. E., & Kooken, W. C. (2011). Connectedness in the context of patient-provider relationships: A concept analysis. Journal of Advance Nursing, 68, 230-245. Phipps, S., Peasant, C., Barrera, M., Alderfer, M. A., Huang, Q., & Vannatta, K. (2012). Resilience in children undergoing stem cell transplantation: Results of a complementary intervention trial. Pediatrics, 129, 762-770. doi:10.1542/ peds.2011-1816 Pope, C., & Mays, N. (2000). Qualitative research in health care. London, England: BMJ. Rutter, M. (1990). Psychosocial resilience and protective mechanisms. In K. D. Cicchetti & S. N. Weintvaub (Eds.), Risk and protective factors in the development of psychopathology (pp. 181-214). New York, NY: Cambridge University Press. Rutter, M. (1993). Resilience: Some conceptual considerations. Journal of Adolescent Health, 14, 626-631. Scrimin, S., Axia, G., Tremolade, M., Pillon, M., Capello, F., & Zanesco, L. (2005). Conversational strategies with parents of newly diagnosed leukemic children: An analysis of 4880 conversational turns. Supportive Care in Cancer, 13, 287-294. Shepherd, E. J. W., & Woodgate, R. L. (2010). Cancer survivorship in children and young adults: A concept and analysis. Journal of Pediatric Oncology Nursing, 27,109-118. Smorti, M. (2012). Adolescents’ struggle against bone cancer: An explorative study on optimistic expectations of the future, resiliency and coping strategies. European Journal of Cancer Care, 21, 251-258. Stegenga, K., & Ward-Smith, P. (2009). On receiving the diagnosis of cancer: The adolescent perspective. Journal of Pediatric Oncology Nursing, 26, 75-80. Teall, T., Barrera, M., Barr, R., Silva, M., & Greenberg, M. (2013). Psychological resilience in adolescent and young
Downloaded from jpo.sagepub.com at UCSF LIBRARY & CKM on April 16, 2015
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adult survivors of lower extremity bone tumors. Pediatric Blood Cancer, 6, 1223-1230. doi:10.1002/pbc.24441 Ueda, R., & Ishibashi, A. (2002). Study of measurement tool for resilience in adolescents with chronic disease: Adolescents with congenital heart disease. Japanese Journal of Pediatrics, 55(10), 135-141. Weekes, D. P., & Kagan, S. H. (1994). Adolescents completing cancer therapy: Meaning, perception, and coping. Oncology Nursing Forum, 21, 663-670. Wong, M. Y., & Chan, S. W. (2006). The qualitative experience of Chinese parents with children diagnosed of cancer. Journal of Clinical Nursing, 15, 710-717. Woodgate, R. L. (1999). Social support in children with cancer: A review of the literature. Journal of Pediatric Oncology Nursing, 16, 201-213. Wu, L. M., Sheen, J. M., Shu, H. L., Chang, S. C., & Hsiao, C. C. (2013). Predictors of anxiety and resilience in adolescents undergoing cancer treatment. Journal of Advance Nursing, 69, 158-166. doi:10.111/j.1365-2648.2012.06003.x Yin, R. K. (2003). Applications of case study research. Thousand Oaks, CA: Sage.
Yin, R. K. (2006). Case study research: Design and methods. London, England: Sage.
Author Biographies Akiko Ishibashi, MN, RN, is a professor at Japanese Red Cross Kyushu International College of Nursing, Fukuoka, Japan. Jun Okamura, MHS, is a professor at Japanese Red Cross Kyushu International College of Nursing, Fukuoka, Japan. Reiko Ueda, DMSc, RN, is a professor at Okinawa Prefectural College of Nursing, Okinawa, Japan. Shosuke Sunami, MD, PhD, specializes in pediatric hematology and is a vice director at the Japanese Red Cross Narita Hospital, Chiba, Japan. Ryoji Kobayashi, MD, PhD, is director of pediatrics at Sapporo Hokuyu Hospital, Sapporo, Japan. Junko Ogawa, DNSc, RN, is an associate professor at Shukutoku University, School of Nursing, Chiba, Japan.
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research-article2015
JPOXXX10.1177/1043454214563935Journal of Pediatric Oncology NursingIshibashi et al.
Article
Psychosocial Strength Enhancing Resilience in Adolescents and Young Adults With Cancer
Journal of Pediatric Oncology Nursing 1–10 © 2015 by Association of Pediatric Hematology/Oncology Nurses Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1043454214563935 jpo.sagepub.com
Akiko Ishibashi, MN, RN1, Jun Okamura, MHS1, Reiko Ueda, DMSc, RN2, Shosuke Sunami, MD, PhD3, Ryoji Kobayashi, MD, PhD4, and Junko Ogawa, DNSc, RN5
Abstract The purpose of this study was to explore ways of enhancing psychosocial strengths in newly diagnosed and relapsed adolescents and young adults (AYAs) to improve their resilience. A descriptive case study was used. The adolescent resilience model (ARM) and the self-sustaining process model were applied as theories. The data were analyzed using pattern-matching logic. Semistructured interviews were conducted with 18 patients aged 12 to 24 years and discharged within 10 years. We found that the newly diagnosed and the relapsing AYAs developed the 5 strength factors of the ARM during and after treatment. Whether the individuals cultivated a positive attitude and sense of purpose early or late, the AYAs developed resilience eventually. A positive attitude and sense of purpose during the early phase of care may be essential for improving resilience. The AYAs benefited from the support of their parents, friends, and previous experience. Individualized support and social resources may be important to develop these strengths. Further research is needed to develop strengths and improve resilience in newly diagnosed AYAs. Keywords resilience, strengths, positive attitude, purpose, adolescents and young adults with cancer
Background Although adolescents and young adults (AYAs) with cancer are at risk for developing cognitive, emotional, and behavioral problems (Shepherd & Woodgate, 2010), they strongly display resilience (Haase, 2004; Teall, Barrera, Barr, Silva, & Greenberg, 2013). Resilience is the process of identifying and developing resources to manage stressors to gain positive outcomes from the experience (Haase, 2004). Adolescents become stronger by successfully coping with stress; this ability serves to promote protective processes and ultimately enhances resilience (Rutter, 1990). Family and social protective factors may positively affect the outcomes of adolescents who have cancer (Haase, Heiney, Ruccione, & Stutzer, 1999). Adolescents with cancer displayed physical distress during treatment and psychosocial distress after treatment (Enskär & von Essen, 2007). However, they exhibited a high level of optimism and openness 1 month after bone cancer therapy (Smorti, 2012) and cognitive and problemoriented coping during therapy (Wu, Sheen, Shu, Chang, & Hsiao, 2013). Survivors of leukemia exhibited more positive protective factors, greater positive resilience, and
lower illness-related scores compared with brain cancer survivors (Chou & Hunter, 2009). Adolescents with cancer require interventions to gain strength and increase resilience. The adolescent resilience model was developed to guide interventions for adolescents with cancer and their family (Haase, 2004). Studies of massage and humor therapy (Phipps et al., 2012), the viewing of a therapeutic music video (Burns, Robb, & Haase, 2009), and the Resilience Education Program for sun safety (Mays, Black, Mosher, Shad, & Tercyak, 2011) for adolescent survivors were reported to lead to positive outcomes. The purpose of this study was to explore the 1
The Japanese Red Cross Kyushu International College of Nursing, Munakata, Fukuoka, Japan 2 Okinawa Prefectural College of Nursing, Kiyoseshi, Tokyo, Japan 3 The Japanese Red Cross Narita Hospital, Naritashi, Tiba, Japan 4 Sapporo Hokuyu Hospital, Siroishi-ku, Sapporo, Japan 5 Shukutoku University, Chuo-ku, Chiba-city, Japan Corresponding Author: Akiko Ishibashi, The Japanese Red Cross Kyushu International College of Nursing, 1-1 Asty, Munakata, Fukuoka 811-4157, Japan. Email: [email protected]
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psychosocial strengths that enhance resilience in newly diagnosed and relapsed AYAs with cancer.
Theoretical Framework The adolescent resilience model (ARM) is a theoretical model that identifies the factors that influence outcomes associated with resilience (Hinds & Haase, 2003). The ARM includes 6 types of factors: illness-related risk, individual risk, family protective, social protective, individual protective, and outcome (Haase, 2004). Among these factors, our study focused on individual risk factors, individual protective factors, and outcome factors, such as resilience. Strengthening protective factors or diminishing risks influence the outcomes and the quality of life. The outcome factors include self-esteem, self-transcendence, and confidence (Haase, 2004). Generally, the outcome factors consist of a positive attitude, a purpose, connections with friends, confidence, and more knowledge about life. The self-sustaining process model (Hinds & Martin, 1988) was developed inductively with adolescent cancer patients to help them achieve and maintain hopefulness and resilience during their experiences (Hinds & Haase, 2003). For adolescents with cancer, it is important to know that particular strategies are more effective at specific times during treatment (Hinds & Martin, 1988). The self-sustaining process model consists of the following 4 sequential phases. The first phase (T1) is cognitive discomfort, which is defined as the degree to which mental uneasiness is related to negative or disruptive thoughts. It occurs immediately after the adolescents become aware of their illness. The second phase (T2) is distraction, which is defined as the degree to which the negative thoughts are replaced with positive thoughts and conditions through cognitive and behavioral efforts. The third phase (T3) is cognitive comfort, which refers to periods of comfort and the lifting of spirits during the course of the illness. In this phase, the adolescents believe that a positive future exists for themselves or others. The last phase (T4) is personal competence, which refers to the adolescent’s self-perception of being resilient, resourceful, and adaptable in the face of the illness (Hinds & Martin, 1988). In this study, these 4 phases were renamed diagnosis (T1), start of therapy (T2), end of therapy (T3), and completion of therapy (T4). The outcome factors were explored as a means of developing the psychosocial strengths of the participants during the phases.
Method A descriptive case study was employed in this research. According to Yin (2003), case studies can be conducted alone or in combination with additional methods such as exploratory, descriptive, and explanatory case studies. A
mixed-methods design uses the same research questions to collect complementary data and to conduct counterpart analysis. A descriptive case study offers a complete description of a phenomenon within its context. Moreover, theories can be important for descriptive case studies that involve the scope and depth of the case being described. Additionally, the analysis can use pattern-matching techniques (Yin, 2003). Pattern-matching logic that compares several pieces of information from the same case to a theoretical proposition was used for the analysis. Each case study and unit of analysis should be similar to the theoretical proposition or should differ in clearly defined ways. Internal validity is supported if all the patterns fit the proposition. However, if the patterns do not fit, the proposition is not accepted (Yin, 2006). The self-sustaining process model served as the theoretical proposition and a guide to define the cases and units of analysis. A semistructured interview guide (Weekes & Kagan, 1994) was used to elicit the meanings and perceptions of the adolescents’ pre- and posttherapy experience and coping strategies. The coping strategies were connected to resilience (Rutter, 1990). The semistructured interview guide was modified to be appropriate for the population in Japan (Ueda & Ishibashi, 2002). In this study, the interviewee was asked about the cancer experience, including social support, in 4 phases.
Participants The participants in this study were selected from a sample of AYAs with cancer from 3 agencies in Japan. The inclusion criteria were as follows: (1) diagnosis of cancer, (2) 12 to 25 years old, (3) outpatient status within 10 years, (4) informed or having received an explanation of their disease, and (5) the ability to understand and participate in the interviews. Japan ranks low in terms of disclosing cancer diagnoses to child cancer patients (Mayer et al., 2005). Therefore, our sampling attempted to encompass a wide age range similar to the distribution of informed cancer patients by age in Japan. Moreover, the survivorship rates are 97% within 10 years and 94% within 20 years after diagnosis (Ishida, 2011). Therefore, a wide range of outpatients were studied.
Procedure A university-based ethical review committee approved this study. Institutional review board approval for the protection of human subjects was granted by all 3 agencies. Potential participants were identified from the patient roster of the list of scheduled visits to the outpatient clinic. The first author met the potential participants during visits to the clinic. Once they expressed an interest in participating, informed consent was obtained from the
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Ishibashi et al. Table 1. Demographic Characteristics of the AYAs (n = 18). Characteristic
Newly diagnosed AYAsa
Relapsing AYAsb
2 8 2
1 2 1 1 1
6 6
5 1
6 2 2 2
4 2
9 3
3c 3c
3 3 2 2 2
3c 1c 1c 1c
6 6
4 2
Age at interview (years) 12 13-15 16-18 19-21 22-24 Gender Male Female Diagnosis ALL AML NHL Other soft tissue cancers Age at diagnosis (years) 6-12 13-18 Time since discharge (months) >5 6-12 13-18 19-24 25< Informed friends of cancer Yes No
Abbreviations: AYAs, adolescents and young adults; ALL, acute lymphoblastic leukemia; AML, acute myelogenous leukemia; NHL, non-Hodgkin’s lymphoma. a First remission. bSecond remission. cRecurrence.
AYAs with cancer. It was also acquired from the parents, and assent was obtained from the adolescents younger than 16 years of age.
Data Collection We conducted individual interviews between October 2008 and August 2011. The interview began with the question “Will you tell me why you visited today?” To conform to Japanese cultural conventions, the interviewer used the term disease rather than cancer during the interview. While the participants waited for the results of a blood test, the interviews with the AYAs with cancer were conducted in a private room by the first author and were audio recorded and transcribed verbatim; these interviews lasted between 30 and 50 minutes.
Data Analysis Rigorous application of coding techniques helped maintain the reliability and validity of the analysis (Pope &
Mays, 2000). The proposition and data were compared to apply the pattern-matching logic. First, the description was read to obtain a sense of the psychosocial strengths, and meaningful items were identified. Second, these meaning units were examined and then transformed into the 5 strength factors of ARM: positive attitude, purpose, connection with friends, confidence, and more knowledge about life. Third, the factors were split into cognitive discomfort, distraction, cognitive comfort, and personal competence. Each category included the strength factors. The distraction and cognitive discomfort categories were compounded because of the patients’ inability to clearly describe their experiences between these phases. The cognitive comfort and personal competence categories were designed to be flexible and nonlinear (see Table 1). Next, the categories were separated and placed in the (T1), (T2), (T3), and (T4) phases. Fifth, the factors of data were compared to the 5 factors of the proposition and examined for fitting or not fitting the proposition. Finally, the pattern took shape. These processes were replicated in the following case.
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Findings A total of 11 males and 7 females aged 12 to 24 years participated in the study; they had an outpatient status for 4 months to 9 years. Of these, 12 were newly diagnosed and 6 had experienced relapses. The diagnoses included acute lymphoblastic leukemia, acute myelogenous leukemia, and non-Hodgkin’s lymphoma. Six newly diagnosed and 5 relapsing AYAs informed their friends of the cancer. Table 1 shows the demographic characteristics of these individuals. Two main themes emerged from the interviews: sloping and bumpy paths for the newly diagnosed AYAs and upright and flat paths for the relapsing AYAs. Table 2 summarizes the 5 strength factors (positive attitude, purpose, connection with friends, confidence, and more knowledge about life) in the 4 phases (cognitive discomfort, distraction, cognitive comfort, and personal competence) for the newly diagnosed adolescents and those experiencing relapses. Figure 1 displays the graphic patterns of results from the cases in Table 2. The average of the graphical patterns for both groups in Figure 1 is depicted in Figure 2, which shows the temporal pattern of the development of psychosocial strengths in newly diagnosed and relapsing AYAs.
Theme: Sloping and Bumpy Paths Newly diagnosed AYAs encountered sloping and bumpy paths in that the strengths of these participants oscillated between T2 and T3, and the strengths rapidly increased in T4 (see Figure 2). The path included the 3 patterns: patients 1, 3, 5, 13, and 14; 7, 11, 12, 15, 17, and 18; and 10 (see Figure 1). For patients 1, 3, 5, 13, and 14, the strengths gradually developed until T1 and T2, decreased in T3, and increased in T4. Patients 7, 11, 12, 15, 17, and 18 showed gradually increasing strengths until the T1 phase, becoming parallel in T2 and T3, and rising in T4. For patient 10, the strengths gradually improved and continued in T1, decreased in T2, and escalated in T3. These patterns exhibited only minor differences; therefore, their descriptions were displayed together. T1. The worries of the newly diagnosed AYAs at the time of diagnosis involved the possibility of dying from cancer, not going to school, and losing their hair. With support from their mothers, these patients expressed a positive attitude. A 15-year-old boy (patient 7) expressed, “I was a bit shocked because I had to have a lot of painful tests. . . . Mother said it’s OK and you would recover.” A 14-year-old girl (patient 5) said, “It must have been very hard . . . mother said that everything would be all right. If I didn’t fight, I wouldn’t get better. I thought I would try my best.” A 17-year-old female (patient 17) and a 12-yearold girl (patient 10) did not receive an explanation of their
disease by parents but knew they needed to stay in the hospital for a long period. Both of them decided to receive the treatment despite their doubt about what was happening to them. T2 and T3. During the inpatient period, when the newly diagnosed AYAs underwent painful procedures and loss of hair, they maintained a positive attitude and a sense of purpose. A boy (patient 7) said, “When things were hard, I just tried to think that it (illness) wasn’t bad.” Despite a lack of contact with friends, the patients maintained their hopes regarding reentering school. A 14-year-old girl (patient 15) said that she wanted to attend an enrollment ceremony of a junior high school with her friends, so she wanted to finish her therapy quickly. More knowledge about life was exhibited. A 15-year-old girl (patient 1) stated the value of living, “I shouldn’t have died because I knew a student who died from cancer in this hospital.” In the near-discharge period, the participants who had a positive attitude and a sense of purpose tried to complete their missed class work. A girl (patient 1) explained, “I studied English as hard as possible by myself. . . . I didn’t want to be behind in class.” A 17-year-old female (patient 17) who had purpose expressed, “The people who worked here were kind to me, so I wanted to have a job interacting with people.” An 18-year-old male (patient 3) who completed the therapy and developed confidence stated, “I did it finally. I gained confidence when I was told about my discharge.” T4. The hope of the newly diagnosed AYAs during the outpatient period was recovery. A boy (patient 7) articulated it as a sense of purpose, “I was told that my blood test was not good . . . but I desire to recover.” Their positive attitudes and sense of purpose were focused on their studies and catching up as much as possible. Hopes of friendship were finally realized. Despite their concern about returning to school after losing their hair, the adolescents reconnected with their friends, which led them to gain confidence. A girl (patient 1) explained that she was getting used to going to school with very little hair because her classmates told her that her hair was beautiful. Friends who supported the patients were informed about the disease. A 13-year-old boy (patient 14) described, “When I told my friend about my cancer, he said that you had a hard time. He talks to me with a usual manner.” A 13-year-old girl (patient 13) who gained more knowledge about life stated that she realized that everyday life was very important.
Theme: Upright and Flat Paths The relapsing AYAs traversed upright and flat paths during their encounters with cancer. Their strengths rapidly developed in T1 and continued to develop until reaching
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Cognitive comfort/Personal competence
+ + +
+ + + + + +
SF + +
+ + SO SP + + SO + SF + + + SP + + SP + SP + SO SP + + + + SF + SF + SF + + + + SF + SF + SP SF + SP SF + SP + + SP SF + +
SF + +
SF + SF + SF + SF + SO SF + SF +
T2
+ + +
+ + + + SO + +
SO +
+
+
+ + + SF + + +
+ + + SP + + + + +
SO + +
+ + + + + +
+ + + + + SF + +
SP +
SF + + + SF + SO + SF +
T3
+ + + +
+
+ +
+ + +
SO + SF SO + + + + SP SF + SP + + + + + SO + + + SP + SF + SP SF + +
+ SO + + + SP + + + + + + + + SP + + + +
SF + +
SO + SF + SF + + SO + SF + SF + SF + SO + SF SO + SF + SF + SF + SF + SF + SF +
SF + SF +
T4
+ + + + + +
SF + SF + + SF +
SO + SF + SF + SO +
+ +
+ + + + + + + + + + SO + +
+ SF SO +
Abbreviations: AYAs, adolescents and young adults; SF, support from friends; SP, support from parents; SO, support from others. a + = the adolescents and young adults who had the same experiences for the 5 strength factors in terms of the corresponding strengths. SF, SP, SO = the adolescents with similar support resources. The categories of cognitive discomfort and distraction and cognitive comfort and personal competence categories were combined. T1 = diagnosis phase; T2 = start therapy phase; T3 = end therapy phase; and T4 = completion of therapy phase.
+ + SP + SP + + +
T1
More More KnowMore Connection Connection More Knowledge Positive ledge About Knowledge Positive With With Knowledge Positive Positive Connection Life Attitude Purpose Confidence About Life Attitude Purpose With Friends Confidence About Life Attitude Purpose Friends Confidence About Life Attitude Purpose Friends Confidence
Cognitive Discomfort / Distraction
1 SO SP + Cases Newly Diagnosed 3 SP + AYAs 5 SP + 13 SP + 14 SF + 7 SP + 11 SO + 12 SO SP + 15 SO SP + 17 + 18 SP + 10 + Relapsing 2 + AYAs 4 + 8 SP + 6 SP + 9 + 16 SP +
Time Process
Strength Factors
Categories
Table 2. Psychosocial Strengths in Newly Diagnosed and Relapsing Adolescents and Young Adults.a
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Psychosocial Strengths
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㻢㻘㻌㻥㻘㻌㻝㻢
5
1, 2, 3, 4, 6, 7, 8, 9, 12, 13, 14, 16, 17
2, 4, 8
5, 11, 15, 18
6, 9, 16
4
1. 14
3
10
7, 11, 12, 15, 17, 18
2
10
3, 5, 13
1 T1
T2 to T3
T4
Prosess of Time
Figure 1. Patterns of strength development in newly diagnosed and relapsing adolescents and young adults (AYAs).a a
Psychosocial Strengths
The X-axis displays the process of time. The Y-axis shows the results of strengths. It is shown by the numbers of their strengths. The developing strengths are indicated by lines (thin lines = the newly diagnosed AYAs; broken lines = the relapsing AYAs). The numbering of the lines shows the cases.
Relapsing AYAs
Newly Diagnosed AYAs
T1
T2 to T3
T4
Process of Time
Figure 2. Temporal pattern of the development of psychosocial strengths in newly diagnosed and relapsing adolescents and young adults (AYAs).
a plateau in T4 (see Figure 2). Patients 2, 4, and 8 displayed strengths that rapidly increased in T1 up to T2 and continued in T3 and T4. Patients 6, 9, and 16 showed strength that quickly rose in T1 and up to T2 and gradually increased in T3 and T4. Their strengths were consistent with 2 patterns: patients 2, 4, and 8; and 6, 9, and 16 (see Figure 1). The 2 groups were exhibited together because there were only minor differences. T1. The initial reactions of the relapsing AYAs to their diagnosis included desires to leave the hospital as quickly as possible and to eliminate overly serious thoughts. They were concerned to receive the therapy and fight cancer by themselves or with parents until they got a good result. A 17-year-old male (patient 4) said, “I wanted a complete recovery. . . . I wanted to receive treatment and get out.” The patients manifested their increased confidence by being willing to endure the therapy. A male (patient 4) stated, “I realized at the time that I had never fallen down
from my illness. I didn’t feel I was in danger. If I needed a transplant, I would do it.” The adolescents gained more knowledge about life. A 14-year-old girl (patient 2) said about her hair, “I don’t feel anything. . . . Having very short hair is a fashion.” A 13-year-old boy (patient 8) and a 12-year-old boy (patient 6) were well supported by their parents when they were diagnosed at age 10 and 9 years, respectively. The boy (Patient 6) showed a positive attitude, At the time, I told my parents that I didn’t want to receive a painful test. They listened to me calmly. After that, I could think that I was a patient and would play a friend in the same ward after the test.
T2 and T3. As inpatients, the participants exhibited positive attitudes and a sense of purpose. They developed goals, such as developing a musical talent and achieving a complete recovery, to provide them with the motivation to withstand the therapy. A girl (patient 2) said, “I thought about my purpose and the activities I wanted to do after discharge.” A 13-year-old boy (patient 8) stated, “I thought that I could stand it (relapse) until I was able to go home for a night.” The patients acquired a sense of connection and support from their friends. A 21-year-old male (patient 16) described, “When I called my friends to listen to something about outside the hospital, they made me feel good.” The patients showed their confidence by informing their friends of relapse, receiving treatment with the goal of recovery, and accepting their hair loss. A boy (patient 8) expressed, “I was 10 years old when they told me about the disease so I didn’t think anything about it (losing hair).” More knowledge about life was evident in their acceptance of their therapy and the results. A
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Ishibashi et al. 24-year-old male (patient 9) said, “If I am not in a good condition, I will do something I have wanted to do.” The positive attitude and sense of purpose during the near-discharge period focused on returning to school, preparing a study plan, and receiving stem-cell transplantation. Ongoing connections with friends allowed the adolescents to have conversations with their peers about the near future. A girl (patient 2) said that she often called her friends and talked about their plans after discharge. A boy (patient 8) said, “I prepared to be back as a member (baseball). . . . I called a member about this.” A 12-yearold boy (patient 6) who acquired confidence during the course of treatment explained, “At first, it was difficult to be inside all the time, so I made plans to study and play with friends all day long.” The patients also acquired more knowledge about life. As expressed by a boy (patient 8), “If I can go through this (cancer experience) I can go through anything.” They also thought of helping people. A male (patient 16) said, “I could understand how hard an experience like cancer is. So, I had to think about helping people with cancer.” T4. The positive attitude and sense of purpose of the adolescents helped them achieve their new goals as outpatients. New goals were developed, including beginning dance lessons, joining a baseball team, and receiving the therapy again. One male (patient 4) who received a poor prognosis described, “I am thinking of receiving stem cell transplantation again.” The new goals also included going to school and having a job that entailed helping people. A male (patient 16) said, “I had cancer, so I want to have a job related to my experience for people in the near future.” The adolescents had connections with their friends and received ample support from them when they were informed of their disease. A boy (patient 8) said, “I informed my friends, so they explained the reason for wearing a hat to some students instead of me.” A male (patient 9) who ran every morning with family members to join a baseball team described, “My friends run the grand together when I was training my muscles.” The confidence allowed the patients to inform their friends about their relapse, and they consequently developed more knowledge about life. As explained by a boy (patient 8), “When they (friends) asked me questions (about cancer), I would answer them truthfully. . . . I felt brave. I need to be more brave.” A girl (patient 2) also explained that she would be able to cope with any difficult situation in the future. A male (patient 16) stated, “I could understand how people with cancer feel. I want to support them in the future.”
Discussion The self-sustaining process model includes 4 processes for achieving competence in resolving health threats
(Hinds & Martin, 1988). The outcome factors, such as positive attitude, purpose, connection with friends, confidence, and more knowledge about life, influence resilience (Haase, 2004). Our study indicated that through the 4 processes, the psychosocial strengths enhanced resilience in AYAs with cancer. In this study, newly diagnosed AYAs found that from an initial period of life threats, the strengths gradually peaked in the outpatient phase. However, the peak line became unstable from the inpatient phase to the neardischarge phase. A positive attitude and sense of purpose in early inpatient care intensified the rest of the strengths as outpatients. In previous studies, positive attitudes helped patients cope with the therapy, prepare for returning to school, and have hope for recovery (Kyngäs et al., 2001). Dealing with cancer also forced patients to return to routine ways of life as quickly as possible (Kyngäs et al., 2001). The development of a positive attitude and a sense of purpose during the early phase may be essential for the growth of resilience. Moreover, a positive attitude and sense of purpose frequently developed with the support of parents. As previous research (Haluska, Jessee, & Nagy, 2002; Lin, Tsai, Lai, Kao, & Tsou, 2003; Wong & Chan, 2006) has reported, the belief that cancer is not fatal and the development of hope for the future in parents may beneficially affect the development of strengths in the child. Additionally, some of the newly diagnosed AYAs did not feel that parents supported them in the early phase because they did not explain their disease. This lack of communication may be influenced by Japanese culture and societal beliefs. Japanese physicians were more likely to think that a child with cancer should be told about their diagnosis only by a parent. Communication of a cancer diagnosis to a child is also influenced by the child’s age as compared to the United States (Parsons et al., 2007). According to Neil and Clarke (2010), nurses should provide health care that is appropriate and sensitive to the individual needs of each child and family. The newly diagnosed participants may have been able to develop their strengths so effectively because their friends offered them support during therapy. Support from friends is important for newly diagnosed adolescents because of their developmental stage (Stegenga & Ward-Smith, 2009). However, our participants might not have been able to easily contact their friends because of the difficulties of the first cancer treatment. Adolescent patients also require support to maintain normalcy during the early phase of the disease (Klassen et al., 2007). Additionally, adolescents with cancer need to be offered information that is focused on the illness, the treatment, and the side effects but not on the future, such as maintaining a social network of friends, emphasizing the importance of attending school, and communicating about emotional concerns (Hokkanen, Eriksson, Ahonen,
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& Salantera, 2004). Some of our newly diagnosed AYAs participants did not inform their school friends about their diagnosis. This approach may have a cultural basis in Japan (Phillips-Salimi, Haase, & Kooken, 2011). A previous study also explained that knowledge of a cancer diagnosis by friends would increase social isolation in Japan (Parsons et al., 2007). Moreover, parents may need social support to feel comfortable informing their children. A study (Scrimin et al., 2005) stated that parents of a child with cancer wanted to have support and to have hope for coping strategies. We suggest that if parents inform their children about their cancer diagnosis, the children are more willing to speak openly to their friends about their experience and to have a normal school life. AYAs with cancer who received high levels of support from their parents tended to receive high levels of support from their friends (Olson & Harder, 2011). Our relapsing AYAs demonstrated that from the initial period of diagnosis, their strengths rapidly increased in the early inpatient period and gradually reached a plateau in the outpatient period. Disease relapse causes great anxiety because of the negative memories that it evokes (Woodgate, 1999). According to the relapsing AYAs in our participants, their previous experience with cancer facilitated the rapid improvement in their strengths and their set of goals during the early stage. The relapsing AYAs formed their goals in a step-by-step manner and then achieved them. According to previous research (Haase et al., 1999; Rutter, 1993), their previous profound experiences fostered strength development. Childhood survivors also have high levels of self-esteem and a greater sense of purpose (Haase, 2004). According to a study (Hinds, Birenbaum, Pedrosa, & Pedrosa, 2002), relapsing adolescents focus on smaller parts of their situation than the entire retreatment plan. This method allows them to not be focused on their relapse, especially if they have support from friends. The coping process of the adolescents was also described as follows: (1) verbally denying the recurrence, (2) accepting the truth of the relapse within several days, (3) being positive about retreatment, (4) focusing on the beliefs of others that the cancer would finally be cured, and (5) focusing on continuing retreatment for their parents’ emotional well-being and showing respect for the parents. Additionally, our relapsing participants who were in contact with friends and informed their friends about their condition in the early stage may have thus been helped toward maintaining their school life and achieving their goals. Previous research stated that well-adapted adolescents with cancer had strong relationships with friends and peer support that protected against psychological distress (Stegenga & Ward-Smith, 2009) and helped in maintaining normalcy (Klassen et al., 2007). Some of the relapsing AYAs slightly talked about their parents. This limited discussion of parents may be attributed to seeking independence as one study
suggests (Stegenga et al., 2009). Moreover, the relapsing patients focus on more realistic topics such as everyday topics or events compared to their parents who focus on the recurrence (Hinds et al., 2002).
Limitations The following limitations may have affected the data. First, the findings from a case study should not be generalized. Second, our patient sample encompassed a wide range of outpatients with a broad age range, which may have introduced recall bias. Third, the range of inpatient therapy was large, and time since treatment was not analyzed. Finally, some interviews were stopped early because the patient took more time for blood testing. Because the interview was conducted while the participants were waiting to be examined by a physician, they were likely to be worried about their results.
Conclusions and Implications The newly diagnosed and relapsing AYAs developed 5 crucial strengths that facilitated resilience throughout the process. Whether the individuals cultivated a positive attitude and sense of purpose early or late, the AYAs with cancer reached resilience eventually. Additionally, a positive attitude and sense of purpose in early inpatient care enabled the patients to gain resilience. Moreover, the AYAs with cancer benefited from the support of their parents, the efforts of their friends to understand their experiences, and their own previous experience. We suggest that a positive attitude and sense of purpose during the early phase andsocial resources are essential for improving the strengths of newly diagnosed and relapsing AYAs. These findings should be considered in designing interventions. Education for not only AYAs with cancer but also their parents, friends, and school should include this information. The newly diagnosed AYAs also need support to maintain normalcy during the early phase of the disease. Further research related to newly diagnosed AYAs who employ fewer strength factors is needed to improve strength and resilience in adolescents with cancer. Acknowledgments The authors thank the AYAs with cancer who participated in our research. We also thank Masayo Uchida, Kazuyo Matuura, Narita Red Cross Hospital, and Sapporo Hokuyu Hospital for support of this study.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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Ishibashi et al. Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was founded by a grant-in-aid for Scientific Research of Japan.
References Burns, D. S., Robb, S. L., & Haase, J. E. (2009). Exploring the feasibility of a therapeutic music video intervention in adolescents and young adults during stem-cell transplantation. Cancer Nursing, 32(5), E8-E16. doi:10.1097/ NCC.0b013e31814802c Chou, L. N., & Hunter, A. (2009). Factors affecting quality of life in Taiwanese survivors of childhood. Journal of Advance Nursing, 65, 2130-2141. Enskär, K., & von Essen, L. (2007). Prevalence of aspects of distress, coping, support and care among adolescents and young adults undergoing and being of cancer treatment. European Journal of Oncology Nursing, 11, 400-408. Haase, J. E. (2004). The adolescent resilience model as a guide to interventions. Journal of Pediatric Oncology Nursing, 21, 289-299. Haase, J. E., Heiney, S. P., Ruccione, K. S., & Stutzer, C. (1999). Research triangulation to derive meaning-based quality-of-life theory: Adolescent resilience model and instrument development. International Journal of Cancer, 12, 125-131. Haluska, H. B., Jessee, P. O., & Nagy, M. C. (2002). Sources of social support: Adolescents with cancer. Oncology Nursing Forum, 29, 1317-1324. Hinds, P. S., Birenbaum, L. K., Pedrosa, A. M., & Pedrosa, F. (2002). Guidelines for the recurrence of pediatric cancer. Seminars in Oncology Nursing, 18(1), 50-59. Hinds, P. S., & Haase, J. E. (2003). Theory development in quality of life for children and adolescents with cancer. In C. King & P. S. Hinds (Eds.), Quality of life: From nursing and patient perspectives: Theory, research, and practice (pp. 143-168). Boston, MA: Jones & Bartlett. Hinds, P. S., & Martin, J. (1988). Hopefulness and the selfsustaining process in adolescents with cancer. Nursing Research, 37, 336-340. Hokkanen, H., Eriksson, E., Ahonen, O., & Salantera, S. (2004). Adolescents with cancer: Experience of life and how it could be made easier. Cancer Nursing, 27, 325-335. Ishida, Y. (2011). Transition issues of childhood leukemia survivors into adult care. Nursing Today, 26(3), 30-35. Klassen, A., Raina, P., Reineking, S., Dix, D., Prichard, S., & O’Donnell, M. (2007). Developing a literature base to understand the caregiving experience of children with cancer: A systematic review of factors related parental health and well-being. Supportive Care in Cancer, 15, 807-818. Kyngäs, H., Mikkonen, R., Nousiainen, E. M., Rytilahti, M., Seppänen, P., Vaattovaare, R., & Jämsä, T. (2001). Coping with the onset of cancer: Coping strategies and resources of young people with cancer. European Journal of Cancer Care, 10, 6-11. Lin, C. C., Tsai, H., Lai, Y. H., Kao, C. C., & Tsou, T. S. (2003). Changes in levels of hope after diagnosis disclosure among
Taiwanese patients with cancer. Cancer Nursing, 26, 155160. Mayer, D. K., Parsons, S. K., Terrin, N., Tighiouart, H., Jeruss, S., Nakagawa, K., . . .Saki-Craighill, S. (2005). School reentry after a cancer diagnosis: Physician attitudes about truth and information sharing. Child: Care, Health and Development, 31, 355-363. Mays, D., Black, J. D., Mosher, R. B., Shad, A. T., & Tercyak, K. P. (2011). Improving short-term sun safety practices among adolescent survivors of childhood cancer: A randomized controlled efficacy trial. Journal of Cancer Survivorship, 5, 247-254. Neil, L., & Clarke, S. (2010). Learning to live with childhood cancer: A literature review of the parental perspective. International Journal of Palliative Nursing, 16, 110-119. Olson, P. R., & Harder, I. (2011). Caring for teenagers and young adults with cancer: A grounded theory study of network-focused nursing. European Journal of Cancer Care, 15, 152-159. Parsons, S. K., Saiki-Craighill, S., Mayer, D. K., Sullivan, A. M., Jeruss, S., Terrin, N., . . .Block, S. (2007). Telling children and adolescents about their cancer diagnosis: Crosscultural comparisons between pediatric oncologists in the US and Japan. Psychosocial Oncology, 16, 60-68. Phillips-Salimi, C. R., Haase, J. E., & Kooken, W. C. (2011). Connectedness in the context of patient-provider relationships: A concept analysis. Journal of Advance Nursing, 68, 230-245. Phipps, S., Peasant, C., Barrera, M., Alderfer, M. A., Huang, Q., & Vannatta, K. (2012). Resilience in children undergoing stem cell transplantation: Results of a complementary intervention trial. Pediatrics, 129, 762-770. doi:10.1542/ peds.2011-1816 Pope, C., & Mays, N. (2000). Qualitative research in health care. London, England: BMJ. Rutter, M. (1990). Psychosocial resilience and protective mechanisms. In K. D. Cicchetti & S. N. Weintvaub (Eds.), Risk and protective factors in the development of psychopathology (pp. 181-214). New York, NY: Cambridge University Press. Rutter, M. (1993). Resilience: Some conceptual considerations. Journal of Adolescent Health, 14, 626-631. Scrimin, S., Axia, G., Tremolade, M., Pillon, M., Capello, F., & Zanesco, L. (2005). Conversational strategies with parents of newly diagnosed leukemic children: An analysis of 4880 conversational turns. Supportive Care in Cancer, 13, 287-294. Shepherd, E. J. W., & Woodgate, R. L. (2010). Cancer survivorship in children and young adults: A concept and analysis. Journal of Pediatric Oncology Nursing, 27,109-118. Smorti, M. (2012). Adolescents’ struggle against bone cancer: An explorative study on optimistic expectations of the future, resiliency and coping strategies. European Journal of Cancer Care, 21, 251-258. Stegenga, K., & Ward-Smith, P. (2009). On receiving the diagnosis of cancer: The adolescent perspective. Journal of Pediatric Oncology Nursing, 26, 75-80. Teall, T., Barrera, M., Barr, R., Silva, M., & Greenberg, M. (2013). Psychological resilience in adolescent and young
Downloaded from jpo.sagepub.com at UCSF LIBRARY & CKM on April 16, 2015
10
Journal of Pediatric Oncology Nursing
adult survivors of lower extremity bone tumors. Pediatric Blood Cancer, 6, 1223-1230. doi:10.1002/pbc.24441 Ueda, R., & Ishibashi, A. (2002). Study of measurement tool for resilience in adolescents with chronic disease: Adolescents with congenital heart disease. Japanese Journal of Pediatrics, 55(10), 135-141. Weekes, D. P., & Kagan, S. H. (1994). Adolescents completing cancer therapy: Meaning, perception, and coping. Oncology Nursing Forum, 21, 663-670. Wong, M. Y., & Chan, S. W. (2006). The qualitative experience of Chinese parents with children diagnosed of cancer. Journal of Clinical Nursing, 15, 710-717. Woodgate, R. L. (1999). Social support in children with cancer: A review of the literature. Journal of Pediatric Oncology Nursing, 16, 201-213. Wu, L. M., Sheen, J. M., Shu, H. L., Chang, S. C., & Hsiao, C. C. (2013). Predictors of anxiety and resilience in adolescents undergoing cancer treatment. Journal of Advance Nursing, 69, 158-166. doi:10.111/j.1365-2648.2012.06003.x Yin, R. K. (2003). Applications of case study research. Thousand Oaks, CA: Sage.
Yin, R. K. (2006). Case study research: Design and methods. London, England: Sage.
Author Biographies Akiko Ishibashi, MN, RN, is a professor at Japanese Red Cross Kyushu International College of Nursing, Fukuoka, Japan. Jun Okamura, MHS, is a professor at Japanese Red Cross Kyushu International College of Nursing, Fukuoka, Japan. Reiko Ueda, DMSc, RN, is a professor at Okinawa Prefectural College of Nursing, Okinawa, Japan. Shosuke Sunami, MD, PhD, specializes in pediatric hematology and is a vice director at the Japanese Red Cross Narita Hospital, Chiba, Japan. Ryoji Kobayashi, MD, PhD, is director of pediatrics at Sapporo Hokuyu Hospital, Sapporo, Japan. Junko Ogawa, DNSc, RN, is an associate professor at Shukutoku University, School of Nursing, Chiba, Japan.
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