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

TL;DR

This study explores how older adults with sickle cell disease experience aging and what strategies help them live longer and healthier lives.

Contribution

The study is the largest to date capturing the unique aging experiences of older adults with sickle cell disease.

Findings

Older adults with SCD identified challenges with aging, including internal and external difficulties.

Participants emphasized lifestyle modifications and self-care as key to managing complications and pain.

Factors like faith and self-efficacy were reported to contribute to longevity and quality of life.

Abstract

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.

As the largest study to date describing the unique lived experiences of older men and women living with SCD, this qualitative descriptive study enriches the understanding of the biggest problems this population faces. The findings of this study provide deep insights into strategies participants felt helped them to live beyond life expectancy, such as their faith, staying on top of their self-care, and healthy lifestyle choices. Older adults with SCD in this study described high levels of self-care abilities and self-efficacy. The wisdom they have gained over the years can be shared with younger adults with SCD promote healthy aging.

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