Learning to live with Hereditary Haemochromatosis: a qualitative descriptive study

Aim. This article will report on a study which was conducted to explore the experiences of individuals living with hereditary haemochromatosis (HH)., Background. Hereditary haemochromatosis is the most common genetic disorder affecting the Caucasian race. It causes excessive intestinal iron absorption resulting in organ damage and impaired function. Little is known about the experience, needs or expertise of those living with this disorder., Methods. A qualitative descriptive approach was used to conduct the study. Purposive sampling was employed to recruit 12 participants attending a haematology clinic in a large teaching hospital in Ireland. Data were collected between February and April 2008 using in-depth interviews and were analysed using content analysis., Results. Three main themes emerged from the data: 'finding out', 'sluggish lethargy' and 'facing challenges'. These themes describe how participants reacted to the diagnosis, experienced the symptoms and met the challenges of coping with the treatment of this disorder., Conclusions. Increased awareness of the challenges experienced by those living with HH can inform the delivery of an effective patient-centered service to individuals diagnosed and living with this genetic illness., Relevance to clinical practice. The knowledge elicited from patients about their experiences of living with HH can be used to inform healthcare professionals about the support and education required to live with this disorder.