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.