1. Psychosocial Service for Cancer Survivors

Cancer diagnosis and treatments often involve psychosocial challenges associated with physical, emotional, spiritual, and interpersonal aspects (Grassi, Spiegel, & Riba, 2017). Psychosocial care for those affected by cancer aims to address the “social, psychological, emotional, spiritual, and functional aspects” of the cancer journey, and is expected to be provided by an interdisciplinary team of service providers (Turnbull Macdonald et al., 2012, p.209).

Psychosocial services in oncology provide resources related to cancer care, such as information, mental health, family services, psychoeducation, transportation, work, school, and financial assistance (Adler & Page, 2008). In the United States, a range of psychosocial services are currently being provided; the most often frequently offered psychosocial services include professionally led support groups, psychiatric consultation, genetic counseling, fertility counseling, rehabilitation therapy, and informational services (Deshields, Zebrack, & Kennedy, 2013). Other services include peer support networks, individual or family counseling, pastoral or spiritual care, employment counseling, financial counseling, exercise or fitness programs, diet or nutrition programs, child care, and transportation assistance (Deshields et al., 2013). Gunn, Turnbull, McWha, Davies, and Olver (2013) explored experiences with psychosocial services among 17 Australian adult cancer patients who resided in rural areas. The researchers found that cancer survivors who accessed the services perceived psychosocial support to be highly beneficial. Peer support programs that included healthy peers and other cancer survivors were found to improve quality of life, self-efficacy, knowledge about health care, and interpersonal skills (Crom, 2009; Zebrack, Oeffinger, Hou, & Kaplan, 2006). In addition, summer camps and adventure programs were found to be popular services that improve self-confidence, independence, and social skills (Elad, Yagil, Cohen, & Meller, 2003). Providing information also improves confidence to manage cancer-related problems (Bass et al., 2006).

2. Unmet Service Needs of Cancer Survivors

Psychosocial care is highly valued and perceived to be beneficial among cancer survivors (Stanton, 2012). However, many cancer survivors report unmet needs not addressed by psychosocial services. McDowell et al. (2011) conducted a study in Australia and reported that approximately 14% of cancer patients reported using a psychosocial support service. Female patients and those with more positive attitudes toward seeking help were more likely to use psychosocial support services after cancer (McDowell et al., 2011). Forsythe et al. (2013) found more than half of adult cancer survivors reported that they did not discuss psychosocial concerns with health care providers, nor did they seek professional counseling or support groups after their cancer diagnosis. Most survivors did not want or recognize the need for such services, indicating a lack of awareness of psychosocial services. Only a few reported that they did not use the services due to certain barriers, such as a lack of information about or perceived unavailability of services. Previous research conducted in South Korea found that a lack of information regarding psychosocial services was identified by parents of childhood cancer survivors as a barrier to the use of such services (Choi et al., 2014; Kim, 2017).

Pediatric cancer patients and survivors can also benefit from psychosocial support (Askins & Moore, 2008; Steele, Mullins, Mullins, & Muriel, 2015). However, they face a lack of developmentally appropriate services. In particular, adolescent and young adult cancer survivors have developmentally distinctive psychosocial service needs (Arnett, 2000; Morgan, Davies, Palmer, & Plaster, 2010). In a prospective study of adolescent and young adult cancer survivors aged 15-39 years, Zebrack et al. (2014) found unsatisfied needs for information (57%), counseling (41%), and practical support (39%) at 1 year following diagnosis. Psychosocial services for adolescent and young adult survivors should concern identity development, including sexual identity, body image, and autonomy, to minimize the negative effects of cancer and promote a sense of normalcy (Arnett, 2000; D’Agostino, Penney, & Zebrack, 2011; Shama & Lucchetta, 2007). Zebrack and Isaacson (2012) suggested the use of developmentally appropriate psychosocial services for adolescent and young adult cancer survivors, including informational, practical, emotional, interpersonal, and existential and spiritual services. Rabin, Simpson, Morrow, and Pinto (2011), in a study of 20 young adult survivors aged 18 to 39 years, identified behavioral and psychosocial programs needed, including those for physical activity, relaxation, emotional support, provision of information, and nutrition services.

In Korea, currently only a few nonprofit organizations (NPOs), including KACLC, KCLF, and the Korean Childhood Cancer Foundation are known to provide psychosocial services to childhood cancer survivors. How childhood cancer survivors experience psychosocial services in Korea, however, is not known. Thus, perceptions of psychosocial support by Korean adolescent and young adult cancer survivors should be examined.

1. Participants

In the cancer literature, a cancer survivor is defined in different ways. In the United States, the National Cancer Institute (2014) defined a cancer survivor broadly as “an individual from the time of diagnosis, through the balance of his or her life” (para. 2). To make the concept of survivorship more specific, the American Society of Clinical Oncology recently defined long-term survivors as “individuals who have successfully completed curative treatment” or “those who are transitioned to maintenance or prophylactic therapy” (McCabe et al., 2013, p.632). Considering prevalent definitions in Korea, our study defined a cancer survivor as an individual who has completed cancer treatments and remains alive.

Eligible participants were adolescent and young adult childhood cancer survivors who had completed cancer treatment at the time of the study. We specifically recruited adolescent and young adult survivors of childhood cancer, aged 15 to 39 years, who were diagnosed before age 18. We purposively included a heterogenous group of participants regardless of recurrence or diverse perceived late effects, to explore the comprehensive service needs of these groups.

Fifteen men (50.0%) and 15 women (50.0%) participated in the study, and their ages ranged from 18 to 35 years (M= 22.7, SD = 3.9). Most participants had a high school education (63.4%), were unmarried (90.0%), and were not in the workforce (73.3%). For more than half of the participants (66.6%), their monthly household income was lower than 4 million Korean won (KRW), which is less than the average Korean household monthly income (in 2013, 4.04 million KRW; Statistics Korea, 2014). Ages at diagnosis ranged from 2 to 18 years (M = 11.6, SD = 4.3). Years since diagnosis ranged from 5 to 26 (M= 12.4, SD = 5.8). Participants reported undergoing chemotherapy (96.7%), radiotherapy (50.0%), stem-cell transplantation (16.7%), and surgery (13.3%). Their cancer types included hematological cancer (56.7%), brain or central nervous system tumors (13.3%), or other tumors (30.0%). Fewer than a quarter (23.3%) experienced recurrence or a second cancer diagnosis, and 26.7% reported experiencing physical late effects. Participants’ demographic and medical characteristics are presented in Table 1.

2. Procedures

Semi-structured in-depth interviews regarding service experiences were conducted with 30 childhood cancer survivors from November 2013 to January 2014. Participants were recruited in Korea through purposive sampling by contacting leaders of self-help groups for childhood cancer survivors. We also attended cancer-related meetings and conferences that were held during the study to announce the study and identify potential eligible participants. Through this process, several eligible individuals voluntarily participated in the study. Hour-long interviews were conducted face to face or by telephone by three researchers who were trained and proficient in qualitative study methods. Telephone interviews were conducted with participants who did not want face-to-face interview or were in remote areas. Interview topic guides covered experiences with psychosocial services and the benefits and challenges of those services. Open-ended questions and probes were used to facilitate participants’ responses. Participants were informed of the purpose, procedures, benefits of participation, right to withdraw, confidentiality, and the audio of the study. Participants were provided with gift vouchers with a value of approximately 20 thousand Korean Won (KRW). Researchers took notes of verbal and non-verbal expressions while interviewing. Interviews were transcribed, and personal information was deleted. Repeated comparison between transcriptions and recordings were conducted to reduce omission or incorrect entries of participants’ verbatim responses. Qualitative data were collected until theoretical saturation was reached. The study was approved by the institutional review board of the affiliated university (201309-SB-112-03).

3. Analysis

Qualitative data were analyzed, using thematic analysis, described as “a method for identifying, analysing and reporting patterns within data” (Braun & Clarke, 2006, p. 79). Thematic analysis was chosen for this study because it provides a rich account of qualitative data (Braun & Clarke, 2006) from cancer survivors. Researchers collaborated throughout the entire process of data collection, coding, memo writing, analyzing, and interpreting. Data and researcher triangulation were used to develop thick description and interpretation of qualitative data (Denzin, 1970). First, all authors had good knowledge of childhood cancer survivors and qualitative research skills, and were deeply involved with the data analysis plan. We read the written transcripts multiple times to familiarize ourselves with the data. When uncertainty arose in the transcripts, audio recordings of the interviews were checked for accuracy. Specifically, we followed criteria for good thematic analysis reported by Braun and Clarke (2006). Initial codes and analytic memos were derived inductively by interactive collaborations between the first and second authors. When initially coding data, we tried to give full and equal amount of time and attention to every word and phrase, which helped prevent excluding significant parts of data and achieved comprehensive coding. Codes were used to review the initial transcriptions, which were recoded repeatedly to increase the validity of analysis. Through those analytic processes, codes were collapsed into broader categories, themes, and comprehensive topics. Finally, six themes were named and defined. These themes were checked among three authors and examined against the original dataset when agreement was not obtained. ATLAS.ti was used to analyze the qualitative data.

1. Financial and Instrumental Services

Participants reported receiving financial or instrumental support through diverse channels. Some received help with medical expenses from the national government through a program designed for low-income individuals. Others received scholarships or treatment expenses through hospital, private donor, or company contributions.

Participants mentioned that instrumental support was helpful. Some participants reported receiving indoor bicycles or laptops, through NPOs or private contributions, to use while hospitalized or home. One participant who had to take a photo to apply for the GED exam mentioned that receiving a wig was a great help. In many cases, financial need motivated them to seek professional help from social workers or other stakeholders.

Participants said they felt that financial and instrumental support tended to be one-time and limited to those who met eligibility criteria that did not apply to many participants. As illustrated in the following quote, some families suffered financial damage from cancer treatment but could not receive support due to their unrealistic expectations of their ability to meet the criteria. Other participants who received financial support also suffered financially because one-time support was not enough to cover expenses for long-period treatment.

2. Psychological Counseling

Almost all participants reported experiencing psychological difficulties, including depression, distress, anxiety, or posttraumatic symptoms, and needed professional psychological services during or after cancer treatment. Most participants, however, did not seek the services due to the public stigma attached to psychological counseling. Some participants also doubted the effectiveness of counseling services in Korea.

Only a few participants reported seeking professional services for psychological difficulties. Some participants reported going to psychiatrists on their own or through referrals from their oncologists. However, it was difficult to receive professional counseling or treatments. One participant mentioned that a psychiatrist had just prescribed medicine that could help insomnia or depression, without proper counseling or treatments. Some participants expressed frustration about not receiving the kinds of professional help they were seeking for their psychological issues.

Some participants who acknowledged the need for psychological services actively sought a range of psychological services, such as art therapy, family counseling, and group counseling through school or NPOs. Although these services helped them share their difficulty after cancer treatment, some providers did not use appropriate methods to heal their wounds. As described in the following quote, participants were not satisfied with the quality of the services and felt that the provider did not have a great understanding of childhood cancer survivors and their families: “They just do counseling without understanding us.” Another survivor said that the counseling that he received was an “island” approach because no other systems, such as family and social, were taken into consideration.

3. Schooling and Learning

Most participants did not attend school while receiving treatment and, therefore, had difficulty in catching up on school work. Some participants did not have any educational opportunities during or after treatment because they did not have information on what options they had about education, or no services were available at that time. Thanks to a policy change, those who received treatment more recently could use hospital and online school services to get credits for graduation and to catch up on missed school work during or after treatment. Online school involves participants’ socializing with their peers and teachers, even during treatment. One participant mentioned that thanks to online learning with video chat during treatment, it was a great pleasure to meet friends and feel connected to peers. Further, this helped her adjust to school after treatment.

Participants still had difficulty with schooling because not all hospitals had school services or the quality of educational services did not meet their expectations. Different age groups of patients participated in educational programs in hospitals, but the programs focused mainly on children, and, thus, it was not adequate or too easy for adolescents. Overall, online schooling was not sufficient to meet their educational needs. There was no system of follow-up with the participants to determine whether they understood the content. They merely received credit for graduation once they logged in and worked with the content, regardless of understanding. Most participants felt that schooling services did not consider participants’ level of understanding in education and could not help them catch up on school work.

Some participants reported receiving private lessons or private institutions, paying for them out of their pocket, during their treatments. Other participants reported receiving one-on-one visits supported by NPOs or hospitals. It was difficult, however, to receive consistent services due to eligibility criteria and time restrictions. For example, the services were available only during a vacation period and not sufficient for patients to catch up on school work. Further, most of the teachers were volunteer college students who were not trained for such a purpose.

4. Mentoring

None of the participants received mentoring services through structured programs during or after treatment. Only some participants received a limited mentoring from other cancer survivors whom they met through self-help groups. Even such informal mentoring and interaction, however, was helpful for them. As described in the following quotes, survivors said they felt that their feelings were validated by other mentors or survivors, whose advice about topics such as school reentry, peer relationships, and careers was valuable. Participants preferred mentoring or advice about employment, marriage, and university life from those who already experienced treatment and survivorship and were at a similar age and age of diagnosis.

In addition, participants were recommended by the hospital or an NPO to provide mentoring services to newly diagnosed childhood cancer patients or survivors who just finished their treatment. As indicated in the following quotes, they felt proud of their growth and rewarded.

Because these mentors had not received any training, they experienced a great deal of anxiety. It was difficult for them to talk openly with a mentee with cancer who was not ready to open up. In addition, their past trauma as cancer patients and survivors would come up again, which they found difficult to handle.

5. Family Support

Survivors reported participating in family support activities, such as family retreats or sibling camps that were held by hospitals or NPOs. Through these activities, they were able to spend quality time with their families and share their feelings with them. Such opportunities helped the participants refresh their battle against cancer and build strong bonds with their family and encourage communications. Further, they could share information and experiences with those who had similar experiences.

Many participants wanted to participate in sibling camps, where they could rebuild bonds with siblings, even long after cancer treatment. There were age restrictions, however, and young adult survivors were not able to participate in the camps. They felt frustrated about the age restriction and said, “The most important thing is that we share the same experiences, although [we are] not the same ages.” Because most were adolescents or young children, young adult survivors could not share their difficulties.

6. Self-Help Activities

Most participants participated in self-help activities for cancer survivors supported by NPOs. They held workshops regularly and planned their long-term activities to build strong bonds among members. For example, they would go to the hospital and play with childhood cancer inpatients to provide respite care for their parents. They also held seminars for parents to provide information about treatment experiences and share their hope for treatment. They shared information and feelings related to cancer experiences, helping them realize they were not alone. They described being happy that there were places where they were needed, which helped them to feel fulfilled.

Self-help activities are not mandated or open to all members. Therefore, participation is not consistent and focused on socialization among members. Because most members are adolescents or young adults, leadership and financial support is lacking. One participant mentioned that consistent activities for a common purpose should be developed and that a facilitator can help strengthen the group activities.