Parents' perspectives on caring for children after solid organ transplant

Area of Science:

• Pediatric nursing
• Transplant care
• Family health

Background:

• Solid organ transplantation (SOT) in children necessitates significant adjustments for families.
• Post-discharge care involves complex chronic illness management at home.
• Understanding parental experiences is crucial for effective care transitions.

Purpose of the Study:

• To explore parents' lived experiences during the transition from hospital to home after pediatric SOT.
• To investigate challenges in managing complex chronic conditions post-transplant.
• To identify parental needs during the home-based care phase.

Main Methods:

• Qualitative component of a mixed-methods longitudinal study.
• Semi-structured interviews with parents (N=48) of pediatric SOT recipients.
• Interviews conducted at three time points: 3 weeks, 3 months, and 6 months post-discharge.

Main Results:

• Three distinct phases of transition were identified: 'getting back to normal' (3 weeks), 'becoming routine' (3 months), and 'facing a future' (6 months).
• Families encountered various challenges throughout the transition period.
• Parental experiences and needs evolved over the six months following discharge.

Conclusions:

• The transition to home and complex chronic care after pediatric SOT is a dynamic and challenging process.
• Nurses require an understanding of these evolving parental needs to provide optimal support.
• Proactive preparation and ongoing support are essential for empowering parents in post-transplant care.