Pearce, Jessica, Ray, Robin A., and McKenzie, Suzanne (2018) The voice of haemochromatosis journeys in regional Australia: a qualitative study exploring self-management. Australian Journal of General Practice, 47 (1-2). pp. 64-68.

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Abstract

Background and objectives: Hereditary haemochromatosis is a common inherited disorder of iron metabolism with avoidable long-term sequalae if it is detected early and managed well.

Methods: Semi-structured focus group interviews were held in local community libraries. Data were transcribed verbatim, uploaded to NVivo data management software, descriptively coded and thematically analysed.

Results: Participants talked about living with haemochromatosis as an individual journey that requires balancing their changing symptoms, treatment and the demands of their daily life. Data analysis revealed four major themes: ‘Discovering my haemochromatosis’, ‘Talking about venesection’, ‘Managing with diet’, and ‘Living with haemochromatosis’.

Discussion: People living with haemochromatosis had a positive attitude to the condition, but there were individual variations in the ways they engaged in self-management. A doctor–patient partnership is crucial in the management of haemochromatosis, especially in rural areas. Patients' symptom experiences and self‑management decisions need to be seriously considered.

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