The family centred experiences of siblings in the context of cystic fibrosis: a dramaturgical exploration

Hodges, Amie Scarlett 2016. The family centred experiences of siblings in the context of cystic fibrosis: a dramaturgical exploration. PhD Thesis, Cardiff University. Item availability restricted.

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Abstract

The aim of this thesis is to explore the experiences of siblings within their family, who are living with a child with a life limiting chronic illness. Siblings have been identified as being a marginalized group because there is limited recognition of their sibling voice within the literature and in family centered care practices. Family centred care is an important aspect of children’s nursing in terms of inclusivity and maintaining dignity and respect of the whole family and needs to include the sibling. Therefore specific insight into their worlds is presented to inform care because siblings do need help when journeying along the cystic fibrosis trajectory with a brother/sister. A qualitative methodological narrative inquiry has been elicited to engage siblings within the context of their family with the use of a bricolage of creative participatory methods (n=10 children in middle childhood living with a brother/sister with cystic fibrosis). Narrative interviews, observations and the use of visual media have provided the platform for the siblings expression of their performed voice that was encapsulated in the collection of over 200,000 words of data, along with pictures, poems, songs and artifacts. Goffman’s theoretical framework of dramaturgy was used as the exploratory ‘lens’ in which to view the sibling’s front stage, back stage and centre stage stances. Microsoft word was used to conduct a thematic analysis of the data collected (observations, interviews and visual media), which provided an insight into sibling position, space, roles encompassed in their overall self-presentation in their familial/cultural milieu. Data analysis is presented as a three-act play called “The segments of the sibling mosaic” where the siblings are performing on the stage set of family life within their home. Through interactive performances siblings act out scenes of multiple presentations of self to reveal the contradiction between their ideology and reality of their lives as a consequence of the opposing force of cystic fibrosis. Through the use of Goffman’s framework I suggest that the children’s expression of voice goes beyond the use of the spoken word, as siblings gave voice through their constructed and co-constructed performances. I also suggest that siblings are skilful in their interactions as they are able to fluctuate easily between their dramaturgic front stage and back stage stances. I argue that siblings are placed in a decentralized position in family life and I introduce three prominent positions/spaces where these children stage themselves, which are “in the wings”, “left of centre” and in the “off stage place sets”. I highlight how siblings demonstrate diplomacy and wisdom in their communicative interactions of being good so as to remain protective, loyal and maintain family equilibrium. I argue that siblings should not be labeled or referred to as being well or healthy in the absence of physiological illness, because they provide an insight into their emotional self where a need for help is identified. Bringing siblings to centre stage and using creativity in this study has identified one way of helping them to share their experiences and enabling their voice to be heard to inform future aspects of care. However, further research is suggested.

Item Type:	Thesis (PhD)
Date Type:	Completion
Status:	Unpublished
Schools:	Healthcare Sciences
Subjects:	R Medicine > RT Nursing
Date of First Compliant Deposit:	19 May 2016
Last Modified:	10 Aug 2021 13:34
URI:	https://orca.cardiff.ac.uk/id/eprint/91005

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