"I can't let it stop me": perspectives on aging from older adults with sickle cell disease

More individuals with SCD are living beyond initial life expectancy. Despite a growing population of older adults with SCD, little is known about their unique experiences and needs. Understanding the perspectives of older adults with SCD (age ≥ 50 years) could provide insight on the most pressing concerns that healthcare providers should focus on and strategies to promote healthy aging. The purpose of this study was to describe the aging experiences of older adults with SCD.

In this qualitative descriptive study, we conducted semi-structured interviews with 19 older adults with SCD who received care at a single comprehensive sickle cell program in the Southeastern United States. Data were analyzed using conventional content analysis.

A total of 3 themes were identified. Theme 1 was "challenges with aging" with 2 subthemes: (a) internal challenges and (b) external challenges. Theme 2 was "wisdom gained with age for prevention and management of complications" with 2 subthemes: (a) lifestyle modifications and preventing complications and (b) managing sickle cell pain. Theme 3 was "living beyond life expectancy" with 2 subthemes: (a) differences in expectations for life expectancy and (b) factors contributing to longevity.

These perspectives from older adults with SCD provide guidance for healthcare providers on areas that are most important to them as they age. This also provides practical strategies for prevention and self-management of SCD complications that our participants reported contributed to their quality of life and longevity.