The Immediacy of Illness and Existential Crisis: Patients' lived experience of under-going allogeneic stem cell transplantation for haematological malignancy. A phenomenological study

Abstract

Purpose: This paper reports a study exploring the lived experience of fifteen men and women treated with allogeneic stem cell transplant (SCT) for haematological malignancy. Method: The study followed an interpretive phenomenological methodology using semi-structured interviews. Participants aged between 22 and 68 years were purposively recruited from two specialist treatment centres and were interviewed within three months to one year post SCT between April and September 2013. Data were then analysed using interpretive phenomenological analysis. Results: An overarching theme that emerged from the data was: The Immediacy of Illness and Existential Crisis. The Immediacy of Illness and Existential Crisis developed from participants' experiences of critical events accompanied by enduring uncertainty continuing into the recovery period. Participants suffer major disruption to their lives physically, psychosocially and emotionally, including facing their own mortality, without a sense of when they may resume the normality of their former lives. Conclusions: Ambiguity and uncertainty characterise the experiences of those with haematological malignancy. Whilst participants have access to specialist teams, there are opportunities for health and social care professionals to provide more support for individuals to come to terms with the critical events they have faced and to prepare them for their return home and to continue former lives and aspirations following prolonged hospitalisation.