The ‘listen hear’ study explored the experiences of siblings living with a child with cystic fibrosis.
Siblings experience a journey alongside their brother or sister when living in the context of a long-term condition such as Cystic Fibrosis. This study enabled children to tell their story in a variety of creative ways, including communicating through their social interaction and performance, creating pictures, collages, presenting poems, photos, and artefacts, as well as through vocalisation.
Child siblings between the ages of 7 to 11 were identified as participants. Having a brother or sister with a Cystic Fibrosis adds an additional dimension to children’s worlds, bringing challenges and the need for adaptations, as often the priority care needs within the family are focused on those of the unwell child. Therefore, the needs of siblings without a diagnosis of Cystic Fibrosis may not be identified or may even go unmet. This study provided a platform for siblings to have share their experience, to be listened to and to have their voices heard.
The siblings were visited on up to four occasions in their family homes and the focus for the siblings was to talk about their experience in their family as well as how they saw their future selves. Goffman’s (1959) dramaturgy was applied as a lens to view the worlds of these children.
Siblings discussed encountering moments of separation when their brother or sister was in hospital. They missed their main carer during these separations, and they also express, distress, upset and sadness. For example, when discussing what happens if her brother Toby [pseudonym] has to go back into hospital because of his Cystic Fibrosis, tearful sibling Elinor ([pseudonym] age 8) sucked her thumb and asked, “But who will look after us” “I’m scared”.
Molly ([pseudonym] age 7) also expressed her concern about her sister’s condition and said, “some people may die of that”, expressing her need the need to know more about the condition and the siblings in the study wished for a cure for Cystic Fibrosis.
Elinor used her Barbie dolls house to demonstrate her isolation during her siblings’ treatment giving times. The treatment would take place in the lounge, where she wanted to be, but she would go to her bedroom to be out of the way. It was not a time where she could receive parental attention due to the priority needs of Cystic Fibrosis.
The study identified,
- How children present themselves in the family home.
- Sibling interaction within the family in the context of cystic fibrosis
- Sibling roles and responsibilities.
- Positional spaces occupied during treatment giving times.
- Concerns and emotional labour.
- Future aspirations.
It is important that siblings that are living with a child with Cystic Fibrosis are encouraged to talk about their experiences and how they feel, to help to identify their needs, so that these can be met.
Dr Amie Hodges
Senior Lecturer Children and Young People
Cardiff University, School of Health Care Sciences.
Hodgesas@cuwpadmin
A research scholarship from the Florence Nightingale Foundation was awarded to support this research. Funding was provided by The Band Charitable Trust and The General Nursing Council.
Thank you to all the children and families for their contribution to this study.
PhD supervisors: Professor Daniel Kelly and Professor Katie Featherstone.
References
Goffman, E. 1959. The presentation of self in everyday life. Garden City, New York. Double Day.
PhD Thesis
Hodges, A.S. 2016. The family centred experiences of siblings in the context of Cystic Fibrosis. A dramaturgical exploration. PhD Thesis. Cardiff School of Healthcare Sciences. Available at: https://orca.cardiff.ac.uk/91005/3/ThesisfinaldraftMay18.pdf
Book Chapters
Mannay, D. and Hodges, A.S. 2020. Third objects and sandboxes: Creatively engaging children to share their understandings of social worlds in White, J.E.,(Ed) Seeing the world through children’s eyes. A handbook of visual methodologies and approaches to early learning. (RMIT University Australia)
Hodges, A.S. 2018. The positional Self and Researcher Emotion: Destabilising Sibling Equilibrium in the Context of Cystic Fibrosis. In Loughran, T. and Mannay, D., (Ed) Emotion and the Researcher: Sites, Subjectivities and Relationships. Bingley. Emerald Publishing.
Further reading of interest
Siblings and long- term conditions:
- Hodges, A. Kelly, D. and Tod, J. 2021. Impact on Siblings, in Brimble, M. and McNee, P., (Eds) Nursing care of children and young people with long term conditions. London. Wiley-Blackwell
Transitional care Cystic Fibrosis:
- Bill, S. and Hodges, A. 2021. Transitional care in Brimble, M. and McNee, P., (Eds) Nursing care of children and young people with long term conditions. London
Further information about Cystic Fibrosis
https://www.cysticfibrosis.org.uk/
Sibling Charities
https://www.siblingsupport.co.uk/
National Siblings Day is Sunday 10th April
