Navigating life with single-ventricle CHD: psychosocial needs across adulthood

Area of Science:

• Cardiology
• Developmental Psychology
• Adult Health

Background:

• The population of adults with single-ventricle congenital heart disease (CHD) is increasing.
• Understanding their lived experiences is vital for improving long-term care.
• An adult developmental psychology framework offers a lens for this exploration.

Purpose of the Study:

• To explore the lived experiences of adults with single-ventricle CHD.
• To analyze these experiences through the framework of adult developmental psychology.
• To identify challenges and adaptations across different adult life stages.

Main Methods:

• Qualitative study involving adults (18+) with single-ventricle CHD.
• Experience Group sessions and individual interviews were conducted.
• Thematic analysis categorized experiences by developmental domains and age groups.

Main Results:

• Participants (n=29) spanned emerging (18-29), established (30-45), and midlife (46-60) adult stages.
• Challenges included relationship initiation, career fulfillment, and evolving family caregiving roles.
• Consistent physical limitations, mental health concerns (anxiety, depression), and resilience were noted across age groups.

Conclusions:

• Adults with single-ventricle CHD navigate developmental milestones distinctively.
• Anticipatory guidance tailored to these developmental domains is necessary.
• Early interventions can support optimal outcomes in adulthood for this growing population.