This study explores how family relationships change after children get cancer in Korea.
We recruited childhood cancer survivors through the study announcement on the website of cancer-related organizations and support groups. In-depth interviews were conducted with 30 adolescent and young adult childhood cancer survivors who completed cancer treatment at the time of study. The study was approved by the institute of review board (IRB) of Yonsei University (201309-SB-112-03).
Sixteen male and 14 female participated in the study. Their mean age was 24.0 years, ranging from 18 to 35 years. Their average age at diagnosis was 11.6 years and the average time since diagnosis was 12.4 years. Their cancer types included hematological cancer (60.0%), brain or central nervous system (CNS) tumors (13.3%), or other tumors (23.3%).
The interview was transcribed in the Korean language and transcripts were analyzed by three investigators through independent coding, and continuous discussion and consensus. Data was coded and discussed in Korean and selected quotes were translated into English by bilingual-bicultural researchers.
Almost all the survivors reported that they spent most of the time with their mother and that their other family members, such as siblings and father, stayed with other relatives or on their own during their cancer treatment.
“My younger brother had hard time because he always stayed alone at home. He had to have meals alone….he told me that he had hard time…”
“My parents took care of me and my younger brother moved here and there..stayed with aunts and uncle.”
The survivors expressed a feeling of guilt because their family members could not take care of them and therefore their physical and psychological health has deteriorated.
“They (dad and brother) didn’t eat well while I was hospitalized. They had delivery food almost everyday because they didn’t have time to cook. My father was at work all day and my brother went to school and helped my father after school… Their health got worse, and my dad got depressed because I and my mom was in the hospital.”
Although some participants had better relationships with their siblings, many survivors experienced relational conflicts with their siblings after cancer. The siblings often felt jealous and hurt because their parents paid extra attention to the survivors.
“My dad treated my brother unfairly compared to me. He punished only my brother and he didn’t punish me because I had cancer. So, my brother didn’t like me….”
“My mom couldn’t take care of my younger brother because I was sick So, he seemed to be matured than peers and always take care of me. But, I realized that he got hurt inside”
The majority of the survivors expressed appreciation towards their parents for their support and special care. However, some survivors felt loss of control over their life because their parents were often overprotective with the survivors.
“It’s difficult for me to lose control over my life… My parents does not respect my privacy sometimes and… cancer patients (like me) may take it for granted because our parents saved our lives...”
Some participants reported that their parents had marital conflicts. “My mom had bad relationship with my dad….They seemed to have some problems because of financial burden... I felt bad because my cancer resulted in financial problem…”
Despite the lack of understanding among family members, most survivors didn’t openly talk about their feelings and thoughts with their siblings and parents, showing cultural taboo about childhood cancer in Korea.
The study findings highlight the needs for psychosocial services to identify and help family members living with childhood cancer, who are at risk of developing physical and psychological health problems.