Sickle Cell Disease and the Family
Research type
Research Study
Full title
How do family members experience living with a child with sickle cell disease? How do they think it impacts them individually and as a family? What would family members hope for or suggest in terms of future support for the family if they are impacted negatively by managing this genetic chronic condition.
IRAS ID
158176
Contact name
Ivan Eisler
Contact email
Research summary
The aim of this study is to begin to find out if, how and why different family members of a family that has one or more child with a diagnosis of Sickle Cell Disease (SCD) are impacted by the chronic illness.
An extensive literature review revealed that there is a significant amount of research on families living with chronic illness other than SCD.
There is also research about the impact of SCD on the individual children who have it.
However there appears to be very little research on how living with SCD has a bearing on the whole family nor of how healthcare bodies could be of use to families in mitigating any such difficulties/pressures.
Participants of the study would be parents of a child/children with SCD
They would agree to take part in an interview lasting between 45 - 60 mins that would be conducted either whilst they are at a clinic appointment or at a time and place of their convenience.REC name
South West - Central Bristol Research Ethics Committee
REC reference
14/SW/1093
Date of REC Opinion
4 Nov 2014
REC opinion
Further Information Favourable Opinion