Abstract
This study aimed to explore the experiences of adolescents from Singapore, aged 10–18 years old, living with cancer and their perceptions on how their psychosocial outcomes can be improved. A descriptive qualitative study design was used. Convenience sampling was used to recruit 10 participants from a pediatric oncology ward in a Singapore hospital. Individual semi-structured interviews were conducted. Thematic analysis was used to analyze the data. Five major themes emerged: (1) experience of physical symptoms, (2) emotional response to their condition, (3) changes in social dynamics, and (4) falling behind in academics. The psychosocial outcomes of Singaporean adolescents with cancer could be improved by thorough pain assessments and creating a more conducive hospital environment.
Introduction
Globally, 250,000 adolescents are diagnosed with cancer each year. The period of adolescence is identified as the growth and development that takes place after childhood and before adulthood, between the age of 10 and 19 (World Health Organization, 2017). Although most cases occur in developing countries, childhood cancer is the leading cause of death in terms of noncommunicable disease in developed countries (Lam, 2016). In Singapore, childhood cancer is the second leading cause of death, with 180–200 children and adolescents diagnosed each year (KK Women’s and Children’s Hospital, 2016a). With the advancement of technology, survival rate of childhood cancer rose from 67% to 80% in recent years, implying a 20% mortality rate of the adolescents dying from cancer (Hema, 2018). Cancer and its treatment affect the adolescent in many different ways.
The adolescents in Singapore constitute 11.4% (447,266) of the Singapore population (Department of Statistics Singapore, 2017). Unique from western countries, the changing family structure of increasing dual-earning couples left child rearing duty to the responsibility of grandparents and domestic helper in recent years (Koh, 2013). Education was made compulsory in Singapore in 2003 where every Singaporean child must complete the six years “primary education” where they will take the national examination called the Primary School Leaving Examination (PSLE) at a young age of 12 (Ministry of Education, 2018). After the completion of the PSLE, adolescents will embark on their secondary education of four or five years where the General Certificate of Education-Ordinary Level (O Level) examination would be taken at the end of the secondary education (Ministry of Education, 2018a). The education system in Singapore has been likened as a pressure cooker which adolescents struggled to survive (Koh, 2013).
Adolescents with cancer experience numerous physical effects such as changes in physical appearance, infertility, reduced mobility, fatigue, pain, nausea, vomiting, and malnutrition (Larouche and Chin-Peuckert, 2006; Varricchio, 2004). These physical effects are often accompanied by psychosocial consequences. Typical of adolescents, their view of self is mainly reflected in their physical appearance (Stegenga and Macpherson, 2014). Hence, changes in their physical appearance can bring about alterations in their body image and low self-esteem (Al Omari and Wynaden, 2014; Belpame et al., 2016), which can lead to self-imposed isolation and rejection of friends (Williamson et al., 2010), causing loneliness. Additionally, disruptions in physical daily activities and interruptions in school create a sense of loss of independence (Woodgate et al., 2014) and prejudice their educational achievements (Cicogna et al., 2010). These prohibitions to leading a normal life resulted in a sense of anger and a lack of control in adolescents with cancer (Wicks and Mitchell, 2010). Overall, these adolescents with cancer are at risk for depression, anxiety, and an abnormal level of stress (Larouche and Chin-Peuckert, 2006; Seitz et al., 2009).
Having a cancer diagnosis during adolescence adds more stress to one’s already changing and challenging world. It may also jeopardize the adolescent’s attainment of developmental milestones in life (Al Omari and Wynaden, 2014), hence making them a vulnerable population. Previous literature revealed that the experiences of adolescents are often explored together with that of children or young adults (Bukowinski et al., 2015; Cicogna et al., 2010; Kent et al., 2013). However, adolescents have their unique needs, concerns, and treatment (Love and Sabiston, 2011). The experiences of adolescents at different phases of cancer, such as at diagnosis, treatment, and follow-up, are also often explored together (Earle and Eiser, 2007; Engvall et al., 2011). A previous study (Ameringer et al., 2013) has shown that adolescents on active treatment experience myriad of distressing symptoms. Furthermore, only a few qualitative studies explored the overall experiences of adolescents with cancer with the focus on one issue of appearance change among the other cancer-related issues (Larouche and Chin-Peuckert, 2006; Williamson et al., 2010). Most importantly, to the best of the authors’ knowledge, the experiences of adolescents living with cancer in Singapore have not been explored yet. As such, this study aims to explore the experiences of adolescents living with cancer and their perceptions on the improvements that can be made to their experiences. It is hoped that the findings of this study will provide health-care professionals with more information on the unique challenges and difficulties that adolescents face so that appropriate interventions to improve their experiences can be developed.
Methods
Study design
A descriptive qualitative study design was used. The approach was adopted because it is suitable to explore the experience of adolescents living with cancer as it seeks to explore and understand meaning individuals attribute to a phenomenon (Creswell, 2014). The study was conducted in the pediatric oncology ward of a women’s and children’s hospital in Singapore (KK Women’s and Children’s Hospital, 2016) between October 2016 and February 2017. The teen room in Singapore hospitals is usually located in the pediatric oncology ward and they are equipped with computers, games, and musical instruments for teenagers to play with and interact with one another (Children Cancer Foundation, 2014). Convenience sampling was used to recruit the participants. The inclusion criteria were (i) adolescents aged between 10 and 18, (ii) who were receiving treatment for any cancer diagnosis, and (iii) who were able to read, speak, and understand English. The exclusion criteria were adolescents who were (i) cognitively impaired or (ii) too ill to participate in the interviews. The sample size of 10–15 participants was derived based on previous research studies that investigated similar phenomenon (Al Omari and Wynaden, 2014; Palmer et al., 2007) and data saturation. A total of 10 participants were interviewed. Data saturation was observed on the eighth participant. Two additional interviews were conducted, transcribed, and analyzed to confirm data saturation.
Data collection procedure
The site investigator first screened for potential research participants according to the screening checklist for the study team. Then, the first author approached potential participants in the ward and in Children’s Day Therapy and provided to them a comprehensive explanation of the study details. Interested potential participants and their parents were then each issued an information sheet and consent form. If the potential participant was under 12 years old, a child assent form was given. A total of 21 potential participants were approached. Ten agreed to participate in the study. Some known reasons for refusing to participate included feeling too tired or moody from chemotherapy and unwillingness to recall the cancer experience.
Face-to-face interviews were used for data collection. The semi-structured interviews were conducted by the first author. The interviews took place in a quiet and comfortable room in the ward at a timing of the participants’ convenience. Parents of the participants were not allowed to be present during the interviews to prevent them from influencing their children’s responses (Abu-Saad Huijer et al., 2013). In the Asia context, obedience to parents is highly regarded and children would be compelled to say the right thing in the presence of their parents and hence the accuracy of the findings would be compromised. Rapport with the participants was established before the interviewer addressed the study details and concerns. The interviews were audio-recorded and later transcribed verbatim. Participants were asked to fill up the participant background information sheet.
Ethical considerations
The study was reviewed by the centralized institutional review board (CIRB: 2016/2753). After a comprehensive explanation of the study, written consent and assent from both the parent and the child were taken. Confidentiality of the collected data was adhered to and participation was strictly voluntary. Participants were assured that they could leave the study at any time without any consequences.
Data analysis
Thematic analysis was adopted in this study to identify, examine, and interpret patterns or themes in the qualitative data (Braun and Clarke, 2014). Shortly after each interview, the audio recordings were transcribed verbatim by the first author (ASH) to prepare the data for analysis (Holloway and Galvin, 2016). Afterward, the transcripts were reread repeatedly to increase familiarity with the data (Braun and Clarke, 2014). Two of the authors (SS and SK) with divergent backgrounds and expertise in qualitative research analyzed the transcripts independently. The transcript was color-coded line by line, whereby patterned words or phrases were identified and noted next to the relevant text on the transcript. Codes with similar or overlapping ideas were then grouped under potential subthemes and organized into a table. Once data collection was discontinued, subthemes were analyzed and combined to form overarching themes. Incongruence was discussed between the authors until a consensus was reached. Any discrepancy was discussed with the third author (LXH) who did not analyze the transcripts.
Rigor
Rigor establishes trust and confidence in the results of a research study (Thomas and Magilvy, 2011). To enhance credibility, the first author engaged in self-reflection during data collection and data analysis so that any possible influence on the research process could be avoided. Investigator triangulation was also employed to ensure credibility through the recording of field notes on observed nonverbal communication to maintain completeness and accuracy of the findings. Two authors independently analyzed the data and the findings were discussed until a consensus was reached. An audit trail was maintained in this study to achieve dependability and transferability. Confirmability was achieved by the presentation of the participants’ actual words and the involvement of two other researchers in data analysis. Lastly, broad open-ended questions, prompts, and verbatim transcription were strategies used to achieve authenticity.
The validity of the interview guide was established through the evaluation by five experts. Two of the experts had experience in oncology nursing and the remaining three had a background in qualitative research. Content validity of the interview guide and process was established through one pilot interview. No changes were made to the interview guide and data from the pilot interview were not included in the data analysis.
Results
A total of 10 adolescents who were receiving cancer treatment participated in the study. The demographics are as shown in Table 1. The majority of the participants were aged between 10 and 16, with the mean age being 13.9 years (standard deviation = 2.28) old. There were four male participants and six female participants, which consisted of mainly (90%) Singaporeans, except one who was Indonesian. Five were Chinese, four were Malay, and one was Eurasian. Most (80%) of the participants were in their secondary level of education and had no financial difficulty. They presented with six different cancer diagnoses. The time elapsed since diagnosis ranged from 1 to 75 months, with the average being 3.5 months. Through the interviews, five major themes emerged: (1) experience of physical symptoms, (2) emotional response to their condition, (3) changes in social dynamics, (4) falling behind in academics, and (5) recommendations. The participants’ quotations were presented in their natural forms with no attempt made to correct their English to retain the unique colloquial expressions.
Demographic characteristics of the participants (n = 10).
Theme 1: Experience of physical symptoms
Adolescents describe the debilitating side effects they experienced while undergoing cancer treatment. Some of the commonly experienced side effects were physical pain, fatigue, and changes in appearance, as described by the adolescents in the following: (Chemotherapy caused)…like, my whole body, (I) think, muscle pain and joint pain. Invasive procedures such as setting plugs on the legs…is quite painful…I also had to do, er, the biopsy and the bone marrow aspiration without sedation…I think I fainted halfway through, uh. (P9)
Adolescents’ physical strength was also affected, as explained by one of them: Once I start(ed) receiving the injections, then the lethargy sets in…When I feel weak, I, like, don’t really have the energy and mood to do anything…Doing things that I normally can do easily is a bit difficult. (P10)
Theme 2: Emotional response to their condition
Adolescents shed light on the range of emotions they experienced while undergoing treatment and how they coped with their negative emotions. When they were initially diagnosed with cancer, one of them felt “a little bit more depressed than now” (P4) because he kept thinking about his impending chemotherapy. Another felt “sad and frustrated because, like, I can’t do all the things I used to do in the past” (P10). However, over time, the adolescents slowly adapted to the treatments. One of them reported, “You will get used to it…I was also quite scared at first, ah” (P2). When the inability to do usual daily activities was brought up, one adolescent said, “I feel that, next time, I still can do it once I recover” (P7).
Fear of suffering, bad outcomes, and dying were commonly felt among adolescents. One adolescent shared, “I feel scared because I, like, have the fear of dying…cause I’m not ready” (P10). The same adolescent later mentioned how he adopted a positive mind-set in order to cope more effectively: “You either choose whether you want to stay and get mad or sad over it…or you either move on and, like, tell yourself that you’re strong and you can do it” (P10).
Additionally, another adolescent found that having cancer made him more empathetic and respectful towards others: I’ve gone through that whole, like, really depressed stage of life…I kinda know how my friends feel at some point in time…I have certainly become a bit more respectful of people…cause, like, you cannot really tell what someone is going through until you gone through yourself. (P5)
Theme 3: Changes in social dynamics
Adolescents highlighted the changes in relationships that they experienced with their family and friends. Due to the strict visiting restrictions in the ward and the adolescents’ weak immune systems, they could not meet their family as often. One of them reported limited interactions with his younger siblings: “There’s age limit here, right. Twelve and below cannot come. They [my siblings] haven’t (reached) 12 yet so they cannot come…” (P6). Despite these limitations, some adolescents felt closer to their family and appreciated them more: “Both of them (my parents) will always see me at the same time…I feel like the family relationship is getting closer…because they want me to feel happy” (P1). One adolescent added, “You really need to, like, come together as a family to face this” (P2).
Absence from school, along with strict visiting restrictions in the wards, limited interactions between the adolescents and their friends. As reported by one adolescent, “Only two person can come, but then I got a lot of friends. They want to come all at one go but cannot…” (P6). As a result, there were mixed responses on how close they were with their friends. One adolescent reported, “Because I didn’t see them for about a whole year…a lot of my relationships kinda broke off…” (P5). However, another shared how her friendships were sustained via online communication means: “We have a group chat together…Sometimes, they also, like, video call me to check on me. So, it doesn’t really affect our friendship…” (P10).
In addition, adolescents reported changes in treatment from family and friends. Parents showed more care and concern about their well-being and spent more time with them. One participant said, “They will ask about my condition and stuff like that. They make sure I’m alright all the time” (P9). However, the adolescents did not like the clinginess or being treated like a child. One of them shared, “My father, every time…very pestering me…every time, every hour, message me, call me, then, like, I don’t have space” (P6). The adolescents’ friends also became more cautious around them, with one reporting that “they are much more over-protective” (P6).
Lastly, the adolescents were often confined at home or in the hospital to prevent exposure to bacteria and possible infections. One adolescent expressed his frustration: “Like, confined…in jail, like that…Come (to) hospital (to be) in a room, then after that (when I) go home, (I am) also in another room…cannot freely go outside” (P8). Also, the adolescents in the ward reported that they found these rooms “quite disturbing and very uncomfortable to sleep” (P10), especially when babies or toddlers cry in the middle of the night. Making friends was also hard, as explained by one of the adolescent, “Most of them are babies, there are not much people at the same age” (P8). Also, despite having a teen room in the ward, the adolescents were mostly bedridden and reported that they could not “even move to the room…so if there are specific rooms made for teenagers, like, with the bed…they can socialize” (P5).
Theme 4: Falling behind academically
As the adolescents had to undergo cancer treatment in the hospital, they could not attend school most of the time. They also missed important milestones such as their high school leaving examinations and their graduation ceremony. One of the adolescents shared in a sad tone, I (am) actually sec four (last year of high school) this year, then I have my “O” Level (high school leaving examination)…I actually can go and do my “O” level and go to, like, poly (polytechnic)…but, now (I) cannot…Last Friday, when I just got admitted, they (my classmates) graduated. Then I feel like, oh my god, I am going to miss that. (P4) I’m, like, worried if I can catch up with all the work that they have done…It’s possible that if I can’t catch up, I have to retain…All my friends are going to be in sec four…I don’t want to get left out…. (P10)
Through personal interviews with the adolescents with cancer, better insight was obtained on their physical and emotional experiences, along with the changes in social dynamics and school life that they faced. The findings also revealed that in order to improve the adolescents’ experiences, their needs had to be supported.
Discussion
This study explored the experiences and perceptions of adolescents undergoing cancer treatment who were residing in Singapore. A commonly reported side effect was the physical pain felt by these adolescents. This finding resonates with previous studies (Belpame et al., 2016; Cicogna et al., 2010; Ream et al., 2006). The adolescents experienced pain at different sites of their bodies after receiving chemotherapy. Literature on adult cancer patients revealed that chemotherapeutic drugs actually cause headache, muscle, and joint pain, which were reported by the adolescents in this study (Wolf et al., 2008). Nausea, fatigue, lethargy, and weakness in limbs due to cancer treatment were also commonly reported side effects. These findings resonated with the previous literature (Flavelle, 2011; Hartman et al., 2008). Therefore, it is important for health-care professionals, especially nurses, to engage in thorough pain assessments for these adolescents.
The adolescents in this study reported feeling emotionally sad when they were first diagnosed with cancer. This corresponded with Larsson et al.’s (2010) study, in which the cancer group experienced lower levels of mental health and higher levels of depression shortly after diagnosis. However, the adolescents in this study gradually adapted to the medicines, chemotherapy, procedures, and side effects of their cancer treatment. A study by Wicks and Mitchell (2010) suggested that this adaptation could be due to the adolescents’ high levels of perceived internal control. Perceived internal control is the belief that one’s behavior and attitude is able to control the outcomes and it is related to improved psychosocial adaptation in adolescents with cancer.
In addition, the fear of bad outcomes was prevalent among adolescents, which is similar to Woodgate et al.’s (2014) findings that adolescents feared death from cancer. To overcome this, some adolescents chose to maintain a positive attitude and remain hopeful about recovering from cancer. According to Currier et al. (2009) and Wu et al. (2009), perceptions of the positive side of cancer, as well as rebuilding hope through thought restructuring and envisioning a hopeful future, helped to improve psychological health in adolescents with cancer. As such, it would be helpful for health-care professionals to receive specialized training in delivering psychoeducational interventions.
On the bright side, adolescents also reported becoming better versions of themselves, which was also observed in Engvall et al.’s (2011) study. The adolescents became more empathetic and respectful of others. This was because the sufferings that they had been through humbled them and made them more respectful of people, and they could relate better to those who were sad and depressed (Stegenga and Macpherson, 2014; Wicks and Mitchell, 2010).
With regard to appearance changes, female adolescents were more distressed in this study. The similar findings were observed in previous studies (Koyama et al., 2016; Nozawa et al., 2013) which revealed that temporary changes in appearance such as chemotherapy-induced alopecia caused greater distress to females than males. Nozawa et al. (2013) speculated that this was because greater concerns and expectations are placed on women with regard to beauty and cosmetics.
Our findings revealed that the adolescents could not meet their friends and family due to the strict visiting restrictions in the ward. This is supported by Al Omari and Wynaden’s (2014) study, which attributed it to individual ward isolation and visiting restrictions. However, the adolescents in this study did not report that individual ward isolation prevented them from seeing their family and friends. This variation could be due to the different practices in pediatric oncology wards in different countries. In Jordan (Al Omari and Wynaden, 2014), individual ward isolation and strict visiting restrictions might be routinely enforced for all patients receiving chemotherapy to prevent possible infections, which is likewise in Brazil (Cicogna et al., 2010) and Belgium (Belpame et al., 2016). However, in this Singapore-based hospital, while strict visiting restrictions and reverse barrier nursing are routinely enforced for all oncology patients, individual ward isolation is not routinely enforced for all patients receiving chemotherapy. Such isolation is only enforced in nasopharyngeal aspirate positive cases, high-dose chemotherapy in acute myeloid leukemia cases, and transplant cases. This could possibly explain why the adolescents did not report not seeing their family and friends due to ward isolation.
Similar to previous studies (Wicks and Mitchell, 2010; Woodgate, 2006), the adolescents in this study appreciated their families more and reported that cancer strengthened family ties. They felt that their family got closer and this made adolescents feel happier and at ease. This complies with Brody and Simmons’s (2007) study, in which fathers reported strengthened relationships with their wives. This was because more time was spent together while taking care of their children, and couples relied on each other more for comfort and encouragement (Brody and Simmons, 2007).
With regard to friendships, there were mixed responses from the adolescents. Some of them felt estranged from their friends due to a lack of meet-ups. According to Abrams et al.’s (2007) study, absence from school and other activities might actually place a strain on friendships. However, a few other adolescents reported no change in friendships thanks to constant online communication, similar to a previous study (Valkenburg and Peter, 2007).
The adolescents also reported differences in treatment from family and friends. They appreciated the increased attention and care from their parents and friends, but they struggled with overprotection, clinginess, and being treated like a child by their parents and excessive accommodation by their friends. Similar to our study’s findings, Stegenga and Macpherson (2014) also found that parents and friends became overprotective and more cautious around adolescents with cancer.
Due to cancer treatments, adolescents often missed school, which they were specifically worried about. Cicogna et al.’s (2010) study reported that adolescents could only return to school upon a doctor’s authorization, which depended on their treatment phase and health condition. Absence from school caused adolescents to worry about reaching important milestones, such as graduating from school and struggling to catch up on school work. These were the reasons cited by the participants in this study, whereby they worried about being left behind by their friends who had graduated. According to the report by the Economist Intelligence Unit (2013), Singapore is the most competitive country in Asia and it is ranked third globally as a competitive country. This societal pressure could be the reason that caused great worry and stress among adolescents in this study.
Due to physical weakness and confinement within the hospital, making friends within the ward became an important part of the adolescents’ experiences. The importance of making friends in the ward also concurred with that of Mitchell et al.’s (2006) study, whereby 71% of the children and young people felt that making friends with other children with cancer in the ward was important. Akin to previous studies (Farjou et al., 2014; Fern et al., 2013; Mitchell et al., 2006) that highlighted opportunities to interact with other adolescents as an unmet need, the adolescents in our study also reported that they found it hard to make friends in the ward as most patients were babies. The adolescents in this study complained that due to fatigue, visiting specialized facilities such as the teen room was an issue. Adolescents suggested having a cubicle specifically for bedridden teenagers in the ward for them to socialize. This echoed with the findings of Fern et al.’s (2013) and Gibson et al.’s (2010) studies whereby the adolescents suggested that peer interactions should be initiated by adolescents who are cohabitating in the same ward. However, the presence of a teen room in the ward could nonetheless be the reason why the adolescents in this study did not report the provision of age-appropriate activities and facilities as an area of unmet need, unlike in Mitchell et al.’s (2006) and Stinson et al.’s (2012) studies.
Limitations of the study
This was a single site study, which might limit the transferability of its data to other settings. Convenience sampling was used, which may have limited the representation of adolescents who were not willing to participate in the study. Member-checking to validate the interpretations of the participants’ words was also not performed.
Conclusion
This study examined the experiences of adolescents living with cancer and their experiences were broadly classified under physical, emotional, social, and educational dimensions. Many implications to health-care practice were derived from the findings, such as thorough pain assessments and creating a more conducive hospital environment to provide a more holistic experience. Future research should follow these adolescents with cancer longitudinally to examine for any changes in their experiences as they progress with their treatment. Specifically, the experiences of the parents of children with cancer should be examined so that health-care professionals can better understand and take care of adolescents with cancer and their family needs.
Footnotes
Acknowledgements
The authors would like to thank the National University of Singapore for funding this project, and also the Medical Publications Support Unit of the National University Health System, Singapore, for assistance in the language editing of this manuscript.
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.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National University of Singapore.