Living with Genetic Haemochromatosis V1
Research type
Research Study
Full title
Living with Genetic Haemochromatosis: patient experiences of the disease
IRAS ID
245502
Contact name
Geraldine (Gerri) Mortimore
Contact email
Sponsor organisation
University of Derby
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Genetic haemochromatosis is a common inherited genetic disorder in Caucasians, which if undiagnosed, can lead to cirrhosis of the liver. There is little research which examines patient’s thoughts and feelings of being diagnosed with this life-long disorder, which requires life-long treatment in the form of venesection.
Exploring patient symptoms prior to, and after venesections has not been studied fully, nor the implication of the diagnosis especially if they are diagnosed with cirrhosis. In the initial treatment phase of the disease venesections are undertaken weekly for many weeks/months. This may have a huge impact re time off work to attend treatment, thoughts re blood being removed, needles,cost of parking at the hospital etc.This study will examine the perceptions/perspective and experiences of those living with genetic haemochromatosis. Including how and when patients were first diagnosed with their disease and the effect of this on ontological security (patients sense of who they are), their experience of living with disease, effect if any, on family/loved ones and the patients experience receiving treatment.
Patients will be recruited from the elective planned investigation unit in the local teaching hospital who are attending for weekly venesections. Recruitment will continue until no new data emerges (data saturation). Experience suggests this can be between 30 and 50 respondents. The participants will undergo face to face interviews approximately 30-45 minutes long, which will be recorded and transcribed verbatim. The analysis will be taking using NVIVO (qualitative software package). The findings will be used to improve patient care and raise awareness of the condition
REC name
London - Riverside Research Ethics Committee
REC reference
18/LO/1518
Date of REC Opinion
26 Sep 2018
REC opinion
Further Information Favourable Opinion