Children’s Perspectives on the Experiences of Their Siblings with Chronic Disorders

Abstract

Knowledge about the experiences of children with chronic disorders (CCD) is often based on parent-report. Obtaining self-report from CCD may be challenging due to cognitive impairments associated with many disorders. We explored siblings’ perspectives on the experiences of their brothers and sisters with CCD, which represent a unique intragenerational and peer-based viewpoint. Siblings of children with various genetic disorders involving physical and/or intellectual disabilities were recruited from family courses at a specialist center for rare disorders. Participants (N = 58; M age= 11.4 years, SD = 2.4; range 7 to 17 years; 69.0% girls) attended group sessions focused on siblings’ diagnostic knowledge and emotional experiences. We conducted a thematic analysis following guidelines for consensual qualitative research of 20 videotaped and transcribed group sessions for 58 siblings of CCD. We interpreted siblings’ perspectives as indicating considerable efforts to understand and reflect upon the state of mind of the CCD along the following main themes: Abilities; Intensions; Insight; Emotions; Personality, preferences and desires; and Normality versus difference. Siblings emphasized CCD’s physical, cognitive, and social abilities, focusing more on strengths than limitations. A desire to be normal and lack of insight were common inferred reasons for problematic behavior displayed by the CCD. Siblings expressed fears of bullying of the CCD. In conclusion, siblings show psychologically complex insights into the experiences and mindsets of CCD and should be considered as informants in research and in informing practice interventions for CCD, alongside their parents.