Background

As advances in care extend life expectancy, many adults with sickle cell disease (SCD) require sustained support that extends beyond clinical management into the home and community (Brown et al., 2016; Smith et al., 2022). Caregivers of adult SCD patients (CASPs) frequently assume responsibility for navigating disease, stabilizing emotions, and advocating for systemic change in contexts marked by racialized care and structural constraints (Haywood et al., 2014; Jacob, 2022). However, these caregivers remain largely understudied despite their central role.

Social support is widely conceptualized as a vital factor that enhances the well-being of caregivers (Burleson, 2003; Thoits, 2011). However, this model overlooks the nuanced ways in which caregivers evaluate and even resist the support they receive. This is particularly relevant when considering the cultural, situational, and relational contexts that inform their understanding and practice of caregiving. This study addresses this gap by employing Goldsmith's Normative Approach of Social Support (2004) to investigate how caregivers assess support in terms of its appropriateness, timing, and relational fit. Additionally, it draws on Social Cognitive Theory (SCT) (Bandura, 1986) to examine how caregivers adjust their behaviors and expectations in response to their experiences and environmental feedback.

Method 

We conducted 19 in-depth, semi-structured interviews with CASPs who self-identified as B/AA and had provided care to an adult with a confirmed SCD diagnosis for a minimum of three months. Participants included parents (n = 12), a spouse (n = 1), adult children (n = 4), a grandparent (n = 1), and a granddaughter (n = 1), aged 18 to 65+, residing in Indiana, California, Maryland, Georgia, and Illinois. We recruited participants through SCD clinics, community networks, and peer referrals. Following IRB approval, we conducted interviews via Zoom, recorded and transcribed them verbatim. We analyzed the data using Tracy's phronetic iterative approach, engaging in inductive coding, memo writing, and peer debriefing. Analysis was grounded in SST and SCT to understand how caregivers negotiate support through interpersonal and systemic dimensions.

Results 

Support was often described as conditional, reactive, or misaligned with the needs of CASPs. Many participants reported that offers of help were symbolic or short-lived. One caregiver explained, “Don't come and offer something and then disappear. That's not help, it is performance, and that is sad.” Emotional support was primarily perceived as tied to moments of visible illness. As another participant shared, “You gotta fall apart in front of them for them to show up. And even then, they don't stay long.”

CASPs interpreted supportive communication through spiritual, familial, and moral lenses. A mother caring for her adult daughter emphasized, “They want to help, but they don't get that this is not just a task... It's my life. You don't clock out of this.” Many viewed caregiving as an act of love and a form of spiritual obedience. Praise such as being called “strong” or “resilient” was often seen as a dismissal of vulnerability, as one caregiver noted: “They were like, ‘You're strong, you got this,‘ but sometimes, I just wanted to cry and not be strong. And then they disappear.”

Participants described adapting their help-seeking behavior to protect themselves from emotionally taxing or judgmental support. Several shared that they intentionally withdrew from those who misunderstood their caregiving reality. These narratives reflect the triadic interaction among cognition, environment, and behavior as outlined in SCT. CASPs actively navigated and assessed support rather than accepting it at face value. Practical support was described as consistent, spiritually grounded, and relationally affirming.

Conclusion

Culturally grounded communication strategies are essential for addressing the support needs of B/AA CASPs. Promising directions include training providers to recognize relational and spiritual caregiving values, creating peer-led caregiver education, and fostering continuity in how support is offered. Participants frequently adjusted their help-seeking, indicating a need for interventions that prioritize trust and caregiver-defined relevance. Centering CASPs as co-experts in chronic care delivery offers a critical pathway toward more equitable, responsive, and sustainable SCD support systems.

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2025
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