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Children with acute lymphoblastic leukemia experience pain from the disease, treatment, and procedures. Parents can be effective in managing their child’s pain, but little is systematically known about how they do this. Appreciative inquiry was used to frame the study within a strengths-based lens and interpretive descriptive methods were used to describe pain sources, parents’ pain care role, and key structures supporting parents pain care involvement. Eight paediatric oncology clinic nurses and 10 parents participated. Six key themes per group were identified. Parent themes included establishing therapeutic relationships, relearning how to care for my child, overcoming challenges and recognizing pain, learning parent specific strategies, empowering to take active pain care role, and maintaining relationships. Nurse themes included establishing therapeutic relationships, preparing parents to care for their child, facilitating pain assessment, teaching parents best pain care, empowering parents, and maintaining relationships. These findings can be used to guide clinical practice and future research.

Congenital sideroblastic anemia (CSA) is a hematological disorder characterized by the presence of ringed sideroblasts in bone marrow erythroid precursors. Mutations in the erythroid-specific glycine mitochondrial transporter gene SLC25A38 have been found in a subset of patients with transfusion-dependent congenital CSA. Further studies in a zebrafish model identified a promising ameliorative strategy with combined supplementation with glycine and folate. We tested this combination in three individuals with SLC25A38 CSA, with a primary objective to decrease red blood cell transfusion requirements. No significant impact was observed on transfusion requirements or any hematologic parameters.

Congenital sideroblastic anemia (CSA) is a hematological disorder characterized by the presence of ringed sideroblasts in bone marrow erythroid precursors. Mutations in the erythroid-specific glycine mitochondrial transporter gene SLC25A38 have been found in a subset of patients with transfusion-dependent congenital CSA. Further studies in a zebrafish model identified a promising ameliorative strategy with combined supplementation with glycine and folate. We tested this combination in three individuals with SLC25A38 CSA, with a primary objective to decrease red blood cell transfusion requirements. No significant impact was observed on transfusion requirements or any hematologic parameters.