Parents' experiences one year on from their child's hematopoietic stem cell transplant for primary immunodeficiency

Area of Science:

• Pediatric Hematology
• Immunology
• Psychology

Background:

• Primary immunodeficiency (PI) necessitates hematopoietic stem cell transplant (HSCT) in children.
• Parental experiences following pediatric HSCT are critical for holistic care.
• Long-term psychosocial impacts on families after HSCT require further exploration.

Purpose of the Study:

• To explore parental lived experiences one year after their child's HSCT for PI.
• To identify key themes and challenges faced by parents in the post-transplant period.
• To understand the potential for post-traumatic growth in parents.

Main Methods:

• Qualitative study employing interpretative phenomenological analysis (IPA).
• Semi-structured interviews conducted with eight parents one year post-HSCT.
• Thematic analysis of interview transcripts to identify recurring patterns.

Main Results:

• Parents described an "abnormal normality," navigating daily life with ongoing medical concerns.
• Significant feelings of isolation were reported by parents.
• Gender differences emerged, with mothers and fathers experiencing and expressing challenges differently.
• Parents identified aspects of "positive growth" and resilience despite stressful experiences.

Conclusions:

• Parental experiences post-pediatric HSCT are complex, involving both distress and growth.
• The findings underscore the need for tailored, long-term psychosocial support for parents.
• Healthcare providers should acknowledge and address parental isolation and gender-specific needs.
• Integrating post-traumatic growth perspectives can enhance parental coping and well-being.