The experience of young people who have a sibling living with congenital heart disease

• Main Author: Kennedy, Lorraine
• Published: Queen's University Belfast 2014
• Subjects: 155.4
• Online Access: http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.675664

Background: Chronic illness has been acknowledged to affect the whole family rather than just the individual living with the condition. CHD is one of the most frequently diagnosed illnesses but much of the research has been carried out with the child or parents with less of a focus on siblings. Methods: This study used interpretative phemonological analysis to explore the lived experience of young people who have a brother or sister living with CHD. Results: Four master themes emerged from the data; A Family Fracture, Defending Against Distress, The Struggle for Balance and Looking Forwards but Thinking Back. A questionnaire focusing on psychopathology identified the functioning of this sample of young people to be within normal ranges and not at risk of psychopathology or functioning problems. The themes suggest a process where the young person encounters both risk and resilience factors and is constantly balancing between the two sides. Conclusions: Adjustment to chronic illness in the family can be seen as an on-going process, present even several years after diagnosis. Young people detailed a number of factors emerging from the interviews which suggest the potential for risk and warrant intervention to minimise this. Theoretical links are made between these findings and existing literature. Clinical implications include the use of narrative techniques in intervention and family based intervention. Limitations and directions for future research are also discussed.