PB2276 THERE IS MORE TO LEARN FROM STORIES OF LYMPHOMA SURVIVORS TO FURTHER IMPROVE AFTERCARE: A NARRATIVE INQUIRY
Authors: K.‐S. Jie, J. Friesen‐Storms, D. Quadvlieg, G. Bours, T. van der Weijden, S. Beurskens
Journal: HemaSphere (2019)

Background: Although some research has addressed lymphoma survivors’ aftercare needs, there have been few in‐depth qualitative studies addressing their experience in aftercare. Furthermore, survivors included in these in‐depth qualitative studies do not seem to have been provided with a systematic aftercare consultation soon after completion of treatment. There is a lack of evidence from studies using a narrative approach to evaluate in‐depth the experiences of lymphoma survivors in early aftercare who are exposed to a best‐practice systematic aftercare consultation in which they are stimulated to think about their issues, goals, and possible aftercare options. The personal stories of patients are a powerful source for a rich description of experiences of patients and the meanings that the participants derive from their experiences. Aims: The aim of the study was to examine in‐depth the personal stories of lymphoma survivors in early aftercare who have been exposed to a best‐practice aftercare consultation. The research question was: What are the experiences of lymphoma survivors in early lymphoma aftercare ? The results can be used to further improve early lymphoma aftercare and to provide patients with more tailored and coordinated aftercare. Methods: A narrative inquiry was conducted with lymphoma survivors in a large teaching hospital in the south of the Netherlands. They were recruited after a best‐practice aftercare consultation with an advanced practice nurse, which was conducted between three and eight weeks after treatment. A thematic narrative analysis was conducted by several researchers. Several strategies were used to ensure trustworthiness, in terms of credibility, transferability, dependability, and confirmability, like investigator triangulation, peer debriefing and thick description. The study conformed to the quality standards for Reporting Qualitative Research. Results: Twenty‐two patients were interviewed. When analysing the narratives, six themes emerged: living and dealing with health consequences, coping with work and financial challenges, having a positive outlook and dealing with uncertainty deriving strength from and experiencing tensions in relationships, getting through tough times in life, and receiving support from health care professionals. Participants had to deal with health consequences like fatigue and lengthy absence from work. Their experiences and strategies for dealing with the consequences of the lymphoma varied. The social support they received was greatly valued, although some social relationships had deteriorated. The added value of the aftercare consultation and the need for further consultations was experienced differently. In some cases the consultation led to additional interventions, such as referral to rehabilitation, while in other cases survivors perceived it as rounding off the treatment process. Summary/Conclusion: The stories of lymphoma survivors in early aftercare revealed their experiences of how they coped with various issues in their personal lives. Addressing survivors’ social support and self‐management capabilities, and knowing patient as a person might help to better tailor their aftercare. Implications for practice: an aftercare trajectory based on a systematic approach might help to provide personalized aftercare.