Background: Multiple myeloma constitutes 1.2% of cancer diagnoses in Australia and is characterised by an uncertain trajectory and high symptom burden (e.g. bone pain and fractures, tiredness, infections) contributing to reduced quality of life. The impact of the disease may be exacerbated for people living in rural area and for younger people who face multiple role demands such as parenthood and career coupled with financial instability.
Aim: To explore how a) the diagnosis of a rare cancer, b) motherhood, and c) geographical disadvantage interact to influence the experience of women living with multiple myeloma in Australia.
Methods: An interpretative phenomenological study was conducted exploring the lived experiences of five women with dependent children living in regional and rural Australia. Data was collected through semi-structured interviews and analysed in accordance with interpretative phenomenological analysis principles and guidelines.
Results: Three master themes emerged from the data: a) disease isolation, b) disease impact on self, and c) disease impact on relationships. The theme of disease isolation encompassed issues regarding living with an unknown cancer, isolation within the myeloma population, and isolation due to treatment. The disease impact on self theme explored elements of the experience relating to emotional/ physical trauma and change. The final theme, disease impact on relationships, highlighted the impact of myeloma on the mothering role, the participants’ children and their spouses.
Conclusions: The interaction between the variables of rare cancer diagnosis, mothering dependent children and geographical disadvantage may place women at greater risk of emotional and physical trauma. Enhanced supportive care services and education (of the public and medical professionals) would potentially improve the circumstances of rural mothers with myeloma.