Reflection on biographic disruption in families of a child with short bowel syndrome (SBS) : a diary study

BS is a rare, serious and complex condition whereby half or more of the bowel has been lost, is unable to function, or has been surgically removed. Infants undergo emergency surgery and need ongoing medical intervention to survive. A pilot study found significant ‘biographic disruption’ (the social experience of living with chronic illness) in those caring for a child with SBS (Whitely, 2014) and recommended further research to understand the impact on patients and their families. Background Reflection on biographic disruption in families of a child with short bowel syndrome (SBS): a diary study Jess Brooke, Dr Anna Mary Cooper‐Ryan, Dr Basem Khalil, Dr Antonino Morabito, Dr Margaret Coffey Coping strategies used by parents and siblings of a child with SBS. • How does living with a child with SBS impacts on the family in terms of social, financial and psychological aspects? • How do families cope with their children’s illness? • How do parents and siblings feel when they are first told about the diagnosis? • How do families understand the condition and it’s prognosis?A mixed method study design, which included parents and siblings of a child with SBS keeping a diary over a 2-week period. Diaries are a familiar and readily available tool that can capture daily records of lived experiences, events, appointments, feelings and attitudes (Blytheway, 2012). Diary-keeping can help participants to recollect experiences over a period of time that can be discussed and explored further in an interview (Corti, 1993), and is considered one of the most reliable methods of obtaining information