Exploring What Makes Sickle Cell Patients Feel Cared for & Opportunities for Improvement through a Qualitative Lens
Authors: Vera Alejandro Julian , Dadgostar Porooshat , Booker Naomi , Dennis Regina , Coyne Francis W , Movva Lalita , Fiscella Kevin , Turpin Sharee , Yousefi-Nooraie Reza , Jenkins Ashley M 
Published: December 2024

Background

Individuals with sickle cell disease (SCD) face frequent emergency department (ED) encounters and hospital admissions due to painful vacoocclusive episodes (VOEs). Their care is influenced by health care system and social factors like lack of protocols and disease stigma, presenting a gap in what quality SCD care looks like from the patient perspective. We aimed to explore aspects contributing to patients with SCD feeling well cared during a VOE and ways to improve experiences. Understanding patients' experiences is the foundation for identifying components of ideal care and how to achieve it.

Methods

We conducted a two-hospital qualitative research study using a phenomenological approach. We recruited patients with SCD who had a VOE hospitalization in the last 5 years, purposefully sampling to include those affiliated and unaffiliated with our regional sickle cell center. We developed a semi-structured interview guide with open-ended questions informed by the Health Equity Implementation Framework to explore what made patients feel well cared for during a VOE and identify areas at multiple levels (e.g., patient-provider interactions, hospital, etc.) for improvement. Interviews were transcribed, de-identified, coded and then thematically analyzed using both an inductive and deductive approach by three independent coders. We iteratively obtained feedback on preliminary findings from the larger research team including hospitalists, researchers, a sickle cell center director, a care manager, and a patient with SCD.

Results

We completed 13 semi-structured interviews with patients with SCD (6 affiliated, 7 unaffiliated). Participants included 4 men and 9 women, ages 23-58 years, and had a wide range of hospital admissions in the last five years (1 to over 50 admissions).

We identified two overarching themes: 1) Ideal SCD should be defined by attentive care that includes opportunities to be a self-advocate; 2) Not feeling cared for is the key contributor to poor patient experience.

Theme 1

Attentive care encompassed both timely admission and compassionate treatment from the care team. Participant reports of compassionate care centered around being listened to, and treated with respect. One participant reported, “I feel like [the staff] is always like listening to me and like checking on me asking me how my pain level is, and do I need any meds.” Participants felt that health outcomes were the best when they were given a voice in the management of their care. Through self-advocacy, their relationship with their care teams improved, “We ended up having a meeting and discussing what the issue was and we- everything that worked out basically, and you know, stuff moved on for the better.”

Theme 2

Participants did not feel cared for due to delays in admission and when providers lacked SCD knowledge. A participant described in the ED, “I wait in the lobby for 6-8 hours. I'm already in excruciating pain and have to wait and sit”. Resource constraints like inadequate staffing, limited bed availability, and lack of private rooms were identified by participants as impacting the quality of care. Another factor contributing to not feeling cared for was SCD pain being dismissed as tolerable, a participant mentioned: “I'm rolling on the ground. [The care team] came and refused to help me get up and kept telling me ‘You gotta get up’.”

Part of the healthcare team's lack of SCD knowledge was attributed to stigma: “When you're black, and you go to the hospital, they don't even know about sickle cell disease.” Another shared, “I feel like I always have to educate the provider... I can't just walk in and be treated”.

Discussion

Implementation of increased SCD education for providers and recognizing patients as experts rather than educators in their care can improve how well patients feel cared for. As mentioned, participants felt well cared for when receiving attentive care but not with delays in their treatment, particularly during ED admission. Integrating expedited triage and use of individual care plans to start pain treatment can reduce delays experienced during a VOE. In conclusion, to improve care for patients with SCD during pain crises, a comprehensive understanding of their whole hospital journey is needed. Mapping the patient journey through admission for a pain crisis including phases, facilitators, and barriers to care can inform the health care system and providers on enhancing patient care and integration.