Quality of Life, family relationships and information needs in siblings of children with a chronic illness 
​Approximately 800,000 Australian children have a brother or sister with a chronic illness. Siblings can experience positive effects as a result of having a brother or sister with a chronic illness, such as increased empathy and maturity. However, experiences can also be negative with many siblings reporting ongoing quality of life and mental health impacts. At the same time, parents may feel uncertain about how much information about their child’s illness they should provide to their other children. Family communication and the illness-specific factors of the child with the chronic illness may all contribute to whether a siblings’ experiences are mostly positive or mostly negative. 

What does this study aim to achieve?

The SibStars study aims to better understand siblings’ experiences of growing up with a brother or sister with a chronic illness, to identify the factors impacting siblings’ quality of life (e.g. family communication), and to identify siblings’ information and support needs.

Who can participate?

Siblings who are:
  • At least 12 years of age
  • Living with a brother or sister who has been diagnosed with a chronic illness at least 6 months prior
  • Able to give informed consent
  • Able to speak/read conversational English (support from an interpreter will be offered to participants who may have difficulties understanding any more complex concepts in the questionnaires/interviews)
Parents who:
  • Have at least two children of any age who live at home
  • Have at least one child diagnosed with a chronic illness at least 6 months prior
  • Able to give informed consent
  • Able to speak/read conversational English (support from an interpreter will be offered to participants who may have difficulties understanding any more complex concepts in the questionnaires/interviews

* Siblings and parents will not be invited to participate in the study if the child with the chronic illness is terminally ill and believed to imminently dying or has passed away.

What does participation involve?

Siblings will complete a 30-minute questionnaire and voluntary 20-30 minute interview (either over the phone or face-to-face).
Siblings, if you would like to complete the questionnaire now, please click here
 
Parents will complete a 20-minute questionnaire.
Parents, if you would like to complete the questionnaire now, please click here
 
By clicking the link, you will be taken to a page which provides more information about the study. Please read this information carefully so you can make an informed decision about participating.
​Additional information
Please contact Dr Lauren Kelada at l.kelada@unsw.edu.au if you have any questions about the study or to request hard-copy study information and questionnaires.
 
How is this study supported?
SibStars is supported by the Behavioural Sciences Unit.