Understanding Facilitators and Barriers to Disease Self-Management for Men Living with Sickle Cell Disease

Introduction

Sickle cell disease (SCD), a severe monogenetic disorder of the red blood cells, is associated with high morbidity and mortality, and primarily impacts individuals of African descent. In SCD, common complications, such as severe pain, acute chest syndrome, and stroke can result in early mortality. There have been significant improvements in SCD survival since the 1970’s due to the advent of early interventions to diagnose and prevent disease complications. However, sex-related differences persist. Men with SCD experience shorter lifespan (men: 49.3; women: 55), greater prevalence of chronic and organ complications, and have an estimated $100,000 more in lifetime medical costs. Conscientious disease self-management is required to improve quality of life and reduce morbidity, mortality, and cost of care. While we do not fully understand all factors that contribute to sex differences in life expectancy in SCD, there is evidence to suggest that men are not fully participating in disease self-management to the extent that women participate. Understanding the facilitators and barriers to disease self-management for men is a crucial first step to addressing the self-management needs of men with SCD.

Methods

The objective of this study was to identify facilitators and barriers to disease self-management for men with SCD. Using a sequential explanatory mixed methods design, we collected data on sociodemographic characteristics, health status [genotype, medication use, and disease severity (Adult Sickle Cell Quality of Life Measurement Information System Medical History Checklist-MHC)], and healthcare utilization (emergency department visits and hospitalizations). Using survey results, the interview sample was selected. Men were interviewed about their disease self-management experiences, motivations, facilitators, and barriers. Data was analyzed using an iterative inductive-deductive approach. First, using the rapid qualitive analysis approach described by Alison Hamilton, the transcripts were summarized and complied into matrixes. Data analysis is ongoing. The matrixes will be used to develop an initial coding structure, in conjunction with existing literature and theories and observations/patterns gathered from the data. Visual analysis of themes derived from the qualitative analysis and survey results will be organized into data displays.

Results

Fifteen men completed surveys and interviews, all identified as Black/African American. Mean age was 34.8 (22-71.2), 66.7% were single, 53.3% employed, 80% had an educational status of some college or higher, and 73.3% reported high disease severity (MHC=>2). Participants reported using a variety of medical, holistic, and preventative strategies to manage SCD. Factors that motivated individuals to participate in disease self-management included spirituality, the desire to be present for their children, and intrinsic drive towards personal health and well-being. Facilitators to disease self-management included positive and trusting relationships with healthcare providers, open communication about their SCD with others, having a self-care routine, access to SCD care, support groups for individuals with chronic illnesses, and support from family, friends, and community. Barriers to disease self-management included financial constraints, less structural aid and safety nets being available for men navigating chronic illness, lack of access to comprehensive care settings, stigma and discrimination, lack of social and emotional support, and struggles with mental health. Participants also described how social expectations of masculinity greatly impacted how they navigate management of SCD. Specifically, expectations of stoicism and emotional fortitude inhibited men’s ability to be vulnerable with others about their needs and struggles. Further analysis will include comparisons of men’s experiences by age group and disease severity.

Conclusion

Given the lower life expectancy for men living with sickle cell disease, it is evident that men have unique needs. We have identified several multilevel facilitators and barriers to disease self-management that can be targeted to improve health outcomes amongst men living with SCD. The findings presented underscore the need for gender-specific and tailored approaches, including policy development and support programs designed specifically for men.