Parents’ Experiences One Year On from Their Child’s Hematopoietic Stem Cell Transplant for Primary Immunodeficiency

Abstract

This study explored parental experience one year after hematopoietic stem cell transplant for primary immunodeficiency. Eight parents whose child had undergone transplant were interviewed one year after their child’s transplant. Transcripts were analysed using interpretative phenomenological analysis. Four themes emerged: parents’ paradoxical existence within an ‘abnormal normality’; isolation felt by parents; gender differences between mothers and fathers; and the ‘positive growth’ parents attribute to their experience. As well as describing stressful or traumatic experiences they identified aspects of post-traumatic growth. The methodology used allowed contrasting experiences to emerge and highlights the importance of follow-up for parents as well as children.