Exploring the Long-term Psychosocial Impact of Pediatric Hematological
Stem Cell Transplantation (HSCT) for Non-malignant Diseases
Abstract
Background Understanding the long-term psychosocial impact of
pediatric hematopoietic stem cell transplantation (HSCT) for
non-malignant diseases is needed in order to optimize pre-HSCT
counseling, supportive care, and long-term follow up programs after HSCT
for this group of patients and caregivers. Procedure This
qualitative study included 14 patients transplanted for a non-malignant
disease during childhood. In-depth interviews were held online to
explore patients’ perspectives on the long-term psychosocial impact of
HSCT on their lives. Results were analyzed based on the Grounded Theory
approach. Results Patients’ median age at the time of interview
was 19 years (range 14-49) and median years after HSCT was 12 years
(range 3-33). Four main themes were identified: (1) Doing okay, (2)
Experiencing persistent involvement with healthcare services, (3)
Influence on relationships with loved ones, and (4) Impact on patient’s
life course. Subthemes extracted were doing okay, feeling of being
cured, health limitations, sense of vulnerability, ongoing connection to
the hospital, acceptance, friendship, family relations, development of
own identity, not taking life for granted, social development, impact on
(school) career, and thinking about the future. Conclusions
Patients reported active coping strategies and resilience after this
high-impact treatment. The data highlight the need for patient-adjusted
supportive care, indicating more need of supportive care in the
long-term outpatient clinic.