“It's the Ride of Your Life”: A Qualitative Study on Survivor Awareness and Understanding of Blood and Marrow Transplantation

Abstract

Objective

This paper describes blood and marrow transplantation (BMT) survivors’ and carers' knowledge and understanding of BMT and long-term care requirements.

Methods

Semistructured, online interviews with 22 BMT survivors and 6 carers were used to collect qualitative data. Interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis.

Results

Findings indicate the diversity of information and education received by survivors, the importance of timing in the delivery of information, and the need to provide education as an ongoing intervention in the long-term care provided.

Conclusions

The health, psychological, and functional status of BMT survivors is significantly improved by the provision of better education, understanding, and decision-making around their long-term care. Many survivors lack a good understanding of the BMT process, the late effects of BMT, and the need for and mechanism of long-term follow-up. As the number of BMT survivors increases over time, improvements in how and where education and support are provided need to be addressed to ensure adherence to recommended long-term follow-up requirements.

Implications for Nursing Practice

Nurses who work with BMT survivors should continuously reassess survivors' knowledge and understanding of their condition and provide person-centered education and resources to assist learning and treatment adherence throughout the transplant journey. Further research is necessary to explore the validity and processes of consent for BMT and establish the best model of care for long-term follow-up and education.