Şaşmaz, A., & Karakul, A. (2026). Between crises and care: Childhood realities with sickle cell Anemia: A qualitative study. Journal of pediatric nursing, 88, 72–82. Advance online publication. https://doi.org/10.1016/j.pedn.2026.02.006
Explanation
This study aims to provide a greater understanding of children’s feelings, thoughts, and experience as they navigate their lives dealing with sickle cell anemia.
Key Points
- Qualitative study consisting of individual interviews conducted with 17 Turkish children aged 7-18 with sickle cell anemia (SCA)
- A total of 9 interview questions were given asking about the children’s feelings, emotions, physical (e.g., painful crises) and social health (e.g., support from family), as well as everyday life (e.g., academic performance)
- Results were generalized into 7 themes: Feelings related to SCA, Thoughts about SCA, Painful crisis, Treatment and care process, Family relationships, Social life, and School life
- Feeling related to SCA: SCA affected these children beyond physical symptoms, having an emotional implication
- Children were tired of describing their pain to others, often leading to misunderstandings and resulting in loneliness
- Anger and stress was prominent in the children during hospitalization as treatments would feel longer each time and they did not fully understand the treatment
- Fear of needles as procedures involving blood (e.g., blood draws, transfusions) were painful
- Shame from dependency on others, for example, requiring an assistant to help with walking
- Thoughts about SCA:
- Some children questioned if the condition was a punishment by God or a curse
- Lack of freedom/Vicious cycle: Thoughts of always being back in the hospital
- Lack of hope: Wishing they could receive a transplant or bone marrow donation like other treated patients
- Painful crisis: Described as limbs being torn off, stabbed with needles, bones breaking, breathlessness
- Treatment and care process
- Difficulties with attention to health/nutrition: constantly monitoring the weather, blood pressure, and fluid consumption
- Friendship: Nurses are the closest friends to the children, they understand what they are going through
- Family relationships
- Overprotective attitude from family: suffocated from parent’s worrying
- Blaming: children blaming parents for not taking precautions before having them
- Social life
- Restricted social life: keep their condition secretive or don’t want to constantly explain their condition and become isolated
- School life
- Lower academic achievement compared to other students due to lack of attendance from hospitalization
- This study provides a significant child-centered perspective of SCA, providing clarity of the lived experiences and voices of children rather than relying on parent’s description of their child’s difficulties with SCA. The results of this study can improve patient treatments of children with SCA, extending beyond pain relief through mediation to also include emotional therapy such as positive thinking to improve children’s mental health.
Limitation
These patients involved in the study are only a small group and should be generalized to all children dealing with SCA, as results may reflect regional culture (e.g., Turkey) and differences in healthcare systems. Experiences are subjective and can differ between younger children and adolescents due to development (e.g., cognition, emotional expression).
Written By: James La
These voices matter. And by listening to them, we can build care systems that don’t just treat disease, but truly support children in living fuller, more confident lives!
