Challenges and opportunities: adjustment to life post transplant for adults with cystic fibrosis and the impact on their professional support needs.

Abstract

Lung transplant can improve both quality and quantity of life for a person with Cystic Fibrosis (CF) at end stage respiratory disease. However, life post transplant can be challenging both medically and psychologically due to the need to adjust to a significantly changed health status, as well as understand and manage the side effects and medical complications of transplant. This study questioned, whether from a service perspective, the support needs of adults with CF changes with transplant and how a specialist CF centre should accommodate this. In order to do this, a more detailed understanding of the experiences of a post transplant group was sought utilising qualitative methodology. Eleven participants or sixty-five percent of adults with CF post transplant who attend one of Scotland's largest specialist CF centres participated in semi-structured interviews. Framework analysis was chosen as the method of analysis due to its relevance in a health care setting. A framework was generated consisting of four broad areas of post transplant adjustment: Recovering; Adjusting and realising; Redefining and pursuing and; Managing the issues of post transplant life. Each area has activities and key factors which provide more information about post transplant adjustment life as well as factors that may account for individual differences. In general, and in the absence of medical complications, participants adjusted to transplant with the support of partners, families and local CF and transplant services. They did not indicate the need for dedicated post transplant services in their local CF centre, but found communications between service providers to be inefficient. When faced with medical complications especially rejection, participants reported needing more psychosocial support. Recommendations include an increased awareness of the processes of psychosocial adjustment post transplant for health professionals, psychological intervention at times of crisis and more efficient communication between transplant and local CF services.