Abstract
Aim This paper reports a study exploring the lived experience of fifteen men and women treated with allogeneic stem cell transplant (SCT) for haematological malignancy. Background Evidence suggests that treatment of haematological malignancy including allogeneic stem cell transplant has a significant impact on the quality of life (QoL) of recipients and quantitative studies have measured dimensions such as physical function and psycho-social and spiritual domains. Fewer studies have considered individual’s lived experience of allogeneic stem cell transplant (SCT) and their subsequent recovery. Methods The study followed an interpretive phenomenological methodology using semi-structured interviews. Fifteen participants aged between 22-68 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 methodology to gain insights into their lived experience including their personal and social experience of the world following treatment. Findings Two overarching themes emerged from the data: The Immediacy of Illness & Existential Crisis and The Recovery Journey. The Immediacy of Illness and Existential Crisis illustrate the participants’ experiences of critical events in relation to disease onset, diagnosis and treatment and the enduring uncertainty which continues into recovery including facing their own mortality. Participants suffer major disruption to their lives physically, psychosocially and emotionally as a result of illness without a sense of when they may resume the normality of their former life. Returning home after several months of hospitalisation is a particularly daunting and challenging time for patients. Participants expressed their fear of being suddenly left in charge of their own health needs and the stark reality of the outside world compared to being cared for in the relative safety of their protective isolation facility in hospital. The responsibility for self monitoring and vigilance in the light of on-going treatment effects such as graft versus host disease (GVHD) and the threat of viral infections warrants increased support from health care professionals. Social support in order to cope with isolation, financial hardship and employment issues similarly deserves attention. Processing traumatic experiences such as life threatening diagnoses, critical events and harsh treatments can be difficult when faced with the immediacy of illness. Participants feel guilty of burdening their loved ones but could benefit from the opportunity to talk to other patients in order to gain perspective and share strategies for coping and adjustment. Conclusion Ambiguity and uncertainty characterise the illness and recovery journey for 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 individual’s returning home after prolonged hospitalisation and in the months that follow. In particular the development of a community based Advanced Nurse Practitioner, skilled in early recognition of treatment effects, could significantly enhance the care of patients in their first year post SCT.