Illness perceptions in childhood cancer survivor and caregivers’ dyads

Abstract

Surviving childhood cancer is a difficult experience for children and their caregivers, it can produce long-term emotional distress. Illness perceptions refer to the way people understand the different aspects related to illness from their individual and collective experiences. Objective: to compare the illness perceptions of adolescent childhood cancer survivors and their caregivers and examine the relationship between illness perception of childhood cancer survivors, their caregivers, and sociodemographic, illness, and treatment variables. Forty-three survivor-caregiver dyads (the mean age of a survivor 17.05 years old; the mean age of caregivers 47.53 years old) participated in the study and answered the Brief Illness Perception Questionnaire (Brief IPQ) and Demographics data. Results: Results showed significant differences in the illness perceptions of survivors and caregivers. Caregivers presented more negative cognitive perceptions than survivors (t = −6.701, p < 0.001), especially in the identity dimension (t = −4.327, p < 0.001), and more negative emotional perceptions than survivors (t = −4.132, p < 0.001), both in concern (t = −3.695, p < 0.001) and emotional representation (t = −3.466, p < 0.001). No significant correlations were found between survivors' and caregivers' illness perceptions and sociodemographic illness variables. Conclusion: These findings showed that even though dyads went through cancer together, survivors’ and caregivers' perceptions of childhood cancer are different, indicating the need to better understand how children growing up with a chronic disease develop such illness perceptions and their experience.

Perception of Korean healthy adolescents on cancer and adolescent cancer survivors: a cross-sectional survey

“…In a study examining the perception of mothers with children diagnosed with cancer, mothers perceived their children as less independent compared to healthy children, and more often displayed an emotionally ambivalent attitude towards their children than that of their counterparts with healthy children [ 22 ]. In a study on illness perception focused on childhood cancer survivors and their caregivers, caregivers perceived the illness to be more severe compared to the perception of cancer survivors themselves; the study recommend the need for expert intervention to bridge this gap in perception [ 23 ]. Moreover, they emphasized that these perception gap findings would provide valuable insights into the understanding of relationships with other mental health variables, including psychological trauma, fatigue, and the process of returning to school and work [ 23 ].…”

“…In a study on illness perception focused on childhood cancer survivors and their caregivers, caregivers perceived the illness to be more severe compared to the perception of cancer survivors themselves; the study recommend the need for expert intervention to bridge this gap in perception [ 23 ]. Moreover, they emphasized that these perception gap findings would provide valuable insights into the understanding of relationships with other mental health variables, including psychological trauma, fatigue, and the process of returning to school and work [ 23 ]. They also stressed the importance of monitoring these differences in perception between survivors and caregivers to gain better understanding of the interconnections among these variables [ 23 ].…”

“…Moreover, they emphasized that these perception gap findings would provide valuable insights into the understanding of relationships with other mental health variables, including psychological trauma, fatigue, and the process of returning to school and work [23]. They also stressed the importance of monitoring these differences in perception between survivors and caregivers to gain better understanding of the interconnections among these variables [23]. However, previous reports including that in ROK have highlighted the significance of various cancer survivor support programs.…”

Perceived vulnerability related to health in cancer post-treated adolescent in Iran: a content analysis

“…This understanding of the disease is effective in the behavior, the person’s adaptation to the disease, the management of the disease by the person, and the treatment of the disease. Studies on disease perception have shown that disease perception includes five dimensions, including recognition of symptoms, duration of the disease, cause of the disease, outcome of the disease, and its curability [ 12 ]. Disease perception is related to some of the results of the illness, including care behaviors and individual management, which can be attributed to the influence of the patient’s beliefs on his behavior.…”