Young Siblings of Children with Cancer: a Photovoice Exploration of Their Experiences, Responses, and Needs

Abstract

Early childhood experiences can impact lifelong well-being, and siblings of children with cancer face psychosocial risks. However, limited research has focused on young siblings under seven years of age, impeding effective care. To address this gap, the purpose of this research was to provide parent perspectives on the experiences and responses of young healthy siblings, aged 3-7, in families affected by childhood cancer. A secondary goal was to conduct a participatory needs assessment. Employing a modified photovoice method, parents shared photos capturing siblings’ experiences, which served as visual expressions of their viewpoints. Then, the parents provided narrative discussion during video-conference interviews, guided by a semi-structured interview. Inductive qualitative content analysis and a layered analysis approach revealed several key themes within the three categories of experiences, responses, and needs: 1) Experiences: Changed Routines and Relationships, encompassing separation and isolation, being together differently, and parent strategies to address challenges; 2) Responses to Changed Routines and Relationships, which entailed strong emotions, both negative and positive, and behaviors such as clinginess and altered play in response to challenging and positive experiences; and 3) Young Siblings’ Needs, focusing on the importance of meeting their practical and emotional needs, including safe supervision, attention, and inclusion, and the promotion of engagement within healthcare settings and family life. These findings underscore the significance of equitable support, inclusion, and understanding for young siblings, emphasizing the need for sibling involvement in family-centered care within healthcare settings.