Stories of Lymphoma Survivors in Early Aftercare: A Narrative Inquiry.
Jolanda H H M Friesen-Storms, Gerrie J J W Bours, Danny J L Quadvlieg-Delnoy and 5 others
PMID 32604137WHAT IT FOUND
Lymphoma survivors described fatigue, reduced exercise capacity, memory and concentration problems, work and money worries, relationship strain, fear of recurrence, and other life problems during early aftercare.
They valued nurse-led consultations for goals and options, not just medical checks.
Key findings
01Survivors reported persistent fatigue, reduced strength and exercise capacity, and cognitive, sensory, appearance, mouth, eye, or voice problems after treatment.
02The nurse-led aftercare consultation was valued for focusing on psychosocial transition, goals, and options, and it often led to rehabilitation, physical therapy, psychological support, social work, fitness, or self-directed training.
03Work, finances, relationships, fear of recurrence, and other life events shaped survivors’ coping and their preference for more or less aftercare contact.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for RNs
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What it does not show
The study was done in a single lymphoma care pathway with a single advanced practice nurse, so the experiences may not transfer to other settings. The sample was mostly older and included very few patients with Hodgkin lymphoma, so younger patients and Hodgkin lymphoma survivors may have different needs. Some partners attended interviews, which may have changed what patients said. The study reports experiences and preferences, not whether the aftercare consultation improved health, work, or quality of life.
Declared interests
The study was funded by a Netherlands Organisation for Scientific Research doctoral grant for teachers. The authors declared no conflicts of interest.
The easy way to misread this
Do not conclude that the aftercare consultation improves outcomes. This qualitative study reports survivors’ experiences and preferences, not effectiveness.