The Experiences of Siblings Living with a Brother/Sister with Cystic Fibrosis.

The aim of this study 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 centered 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.

The course outcomes have provided me with a continuation in my development towards becoming an effective researcher.  The research training has enabled me to complete my recruitment stage of my study n=10 siblings with a brother/sister with cystic fibrosis.  It has enabled me to progress to ‘field work’ stage of research where I actively engaged with children and their families to incorporate the identified research strategies of using visual methods, observations and narrative interviews to elicit narrative inquiry.  Choosing a qualitative methodological ‘narrative inquiry’ enabled the platform for sibling’s expression of their voice.

Goffman’s (1959) theoretical framework of ‘dramaturgy’ has been chosen as the exploratory ‘lens’ in which to view the sibling’s ‘front stage’, ‘back stage’ and ‘centre stage’ stances.  Microsoft word has been chosen to conduct a thematic analysis of the data collected (observations, interviews and visual media), to provide an insight into sibling ‘position’, ‘space’, ‘roles’ encompassed in their overall ‘self presentation’ in their familial/cultural milieu.