Table 3 Coding summary: changes in experiences and QoL

Physical domain

Patients experienced intense pain and frequent hospitalizations

Patients looked physically pale and sickly (underweight, red eyes, yellow eyes, protruded stomach, etc.)

Patients experienced shortness of breath

Patients experienced low energy

Patients were often tired and had to avoid strenuous physical activities (e.g., soccer, running, swimming, etc.)

Low blood

Bled frequently through the nose

Depended on lots of medication to treat pain, infections, low blood count, etc

Low energy and tiredness persisted

Hair loss due to chemotherapy intensified

Bedridden for weeks after HCT

Patients experienced fever and vomiting

Patients were prone to infections

Medications dependence persisted

Patients gained weight

Patients experienced no more pain

No hospitalizations

Patients could sleep better

Patients could breathe better

Patients could eat better

Hair grew back

Patients gained energy and could undertake physical exercise (e.g., running)

Everything felt a lot easier

Still had frequent doctor’s appointments

Patient experienced no pain

Patients experienced no crisis and hospitalizations

Patients experienced no shortness of breath

Patients could sleep much better

Blood levels had significantly increased

Medication-dependence reduced dramatically

Patients looked physically grown, both in weight and height

Patients gained significant amounts of energy and could play sports

Social domain and supports

Patients experienced stigma and isolation

Society perceived SCD as a curse

Patients had limited interaction and socialization (e.g., play, social events, etc.) with peers due to fear of sudden illness

Parental absenteeism due to long hospital stays

Disagreement between parents and patients over medication regimen and the decision to undergo transplantation

Patients and siblings lost friends due to long hospital and home stays post-HCT

Patients stayed away from school and friends to recuperate

Received visitation from church members and family friends during post-HCT hospital stays

Patients went out more frequently and socialized more with friends

Interacted more with family members back home in Africa

Patients returned to school

Economic domain

Parents spent lots of money on hospital bills and medication

Parents missed work and income earning opportunities due to long hospital strays

Parents experienced financial problems due missed work and high medication expenditures

Parents did not pay for the HCT procedure but had to pay for required medications

Parents quit job due to long hospital stays

Parents experienced financial problems due to loss of employment and increased medication expenditures

Psychological domain

Patients expected a shorter lifespan

Patient feared they would suddenly die

Patients and parents were scared of possible infertility due to radiation and chemotherapy treatments

Patients feared they would die during transplantation process

Patients were worried about missing school classes after transplantation

Parents and siblings were sad and mentally stressed

Patients and parents feared that the HCT procedure would fail

Patients were concerned about missing school and doing more work later to catch up with their studies

Patients and parents were happier

Patients and parents’ mental health improved

Patients had thoughts of premature menopause and infertility due to radiation and chemotherapy treatments

Patients could focus more in school

Patients felt they truly overcame sickle cell disease

Patients felt their life was as normal as everyone’s

Patients felt satisfied with life

Parents and patients felt mentally relieved and burden-free