Sickle Cell Disease (SCD) is an inherited blood disorder. It is marked by end-organ effects and increased pregnancy complications. Patients also frequently encounter stigma, racism, and mistreatment within the healthcare system. Our objectives were to (1) understand the lived experience of pregnant patients with SCD and (2) elucidate the facilitators, barriers and gaps in care.

Semi-structured interviews with SCD patients who experienced pregnancy in Canada were conducted (Oct 2024-May 2025), exploring their experiences and barriers/facilitators to care. Recruitment ended upon saturation of themes. Data were coded using NViVo software. Elements of qualitative and interpretive description were used, allowing for collection of unfiltered lived experiences and development of knowledge relevant to clinical context. Coding used a “bottom-up” approach, with data guiding code generation rather than application of codes derived from pre-existing theory. A thematic analysis followed; inductive in nature and utilizing a constant comparison approach.

Eighteen participants were recruited. Mean age was 35 years (SD 5.1). All identified as female. Heritage was reported as Black (n=16), Indigenous-Black (n=1) and Indigenous (n=1). Participants reported being followed in pregnancy by family physicians (n=9), general obstetricians (n=8), high-risk obstetricians (n=13), and midwives (n=1).

Seven themes were identified:

#1: Dwelling with the Burden of Chronic Disease Increased health care interactions in pregnancy due to emergency visits or lengthy hospitalizations: “For someone like me with sickle cell, who spends a lot of time in the hospital…staying in the hospital is just…it's a nightmare…so, yeah, it was a lot of pushing things to the end or a little bit too far, not wanting to be admitted”

#2: Lauding the Merits of Centers with Expertise in SCD Specialized ambulatory SCD clinics for pregnant patients were praised: “The fact that you're seeing both the hematologist & OB and they work together…things that maybe [OB] is not too sure of or maybe [hematologist is] not too sure of…they can…go around the corner and say look I want to give [her] XYZ is this okay?”

#3: Navigating the Healthcare System Despite strong endorsement of theme 2, in emergency settings, participants still described stigma, feeling unheard and needing to self-advocate: “Sometimes I kind of got that ‘you're not really that sick’ or ‘in that much pain’ or I remember like being…discharged before time and then having to go back. And that was kind of frustrating because I'm letting them know, like no I'm not ready to go home and I don't feel well. And then I have to come back because I went home too soon”

#4: Savouring Positive Therapeutic Relationships & Compassionate Care Participants expressed gratitude for the care they received in pregnancy and many felt that their healthcare interactions in pregnancy were better than outside of pregnancy: “Oh my gosh, if I could you know have babies back to back just to be with [the SCD in pregnancy clinic] I would. Just to have them in my life like just to care for me”

#5: Welcoming Pregnancy with Mixed Emotions Some conveyed fear of death in childbirth or perception that their body was incapable of enduring pregnancy. A few felt guilty about passing on SCD or of the effects of opioid analgesia: “There was a point in time whereby I wanted to give up, where I was scared that my child is also going to have what I had and my child is going to suffer. So I actually thought that I don't want a child.”

#6: Coping with Mental Health Challenges Stress and anxiety were commonly mentioned, particularly relating to the fetal/neonatal effects of SCD: “Being in physical pain and the fear of complications for my baby, I had a lot of anxiety. The chronic condition made me hyperaware of some alternate outcomes.”

#7: Suggestions for Change Participants strongly suggested peer support via support groups, mentorship, and educational sessions. They also emphasized need for education of the healthcare team about SCD, increased postnatal support, and financial assistance.

Conclusions: Our study is the first to report on the lived experience of pregnant persons with SCD and identify facilitators and barriers to high-quality, patient-centered care. The results will inform future interventions aiming to advance care, striving toward health care equity for pregnant patients with SCD.

Funded by the Sickle Cell Awareness Group of Ontario.

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2025
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