Journal of Pediatric Hematology/Oncology Nursing

The purpose of this study was to explore the experience of stigma among young adults living with sickle cell disease (SCD) using a hermeneutic phenomenological design.

Seven young adults diagnosed with SCD participated in semi-structured interviews to explore their experience of stigma as young adults living with SCD. Interviews were transcribed verbatim and analyzed using interpretive phenomenology.

The participants’ narratives revealed an overarching theme of the shadows, representing their experience with stigma. The three subthemes further define how they navigate the shadow of stigma and move through varying degrees of dark and light to balance authenticity and protection. Subthemes include (a) the umbra—darkness, (b) the penumbra—dark and light collide, and (c) the antumbra—light.

This study reveals the complex realities of young adults with SCD as they navigate stigma. Each narrative reinforced how stigma is ever-present in their experiences in healthcare, the public, and among family and friends. This research can help health professionals understand the influence stigma has on how young adults with SCD perceive themselves, interact with others, and engage in health-seeking behaviors and highlights the need to address stigma as a structural barrier to health equity.

This one-group pretest–posttest experimental research was conducted to determine the effect of storytelling on the anxiety levels of children diagnosed with cancer.

Children aged 4–10 years and their parents in the pediatric hematology-oncology service of a university hospital were included in the study (N = 39). A 2-day storytelling intervention with the A Hopeful Cloud Story book to help children express their anxieties and cope with the changes caused by hospitalization for cancer treatment was applied to children. The Child Fear Scale (CFS) was used to evaluate the anxiety levels of children before and after the intervention.

The average age of the children was M (SD) = 6.54 (2.11) years, and most were male (56.4%). According to the children's reports, the CFS pretest mean score was M (SD) = 3.54 (0.55), and the posttest mean score was M (SD) = 1.33 (0.48). In the posttest, it was determined that the children's CFS scores decreased (p < .001). According to parent and researcher reports, a significant decrease was observed in the children's CFS scores after the intervention.

As a result, the storytelling intervention is effective in reducing children's anxiety levels. It would be helpful to use a storytelling intervention in the treatment and care processes of children with cancer.

I-131 metaiodobenzylguanidine (MIBG) therapy effectively treats high-risk neuroblastoma but exposes caregivers and healthcare providers to radiation risks. Managing patient anxiety and agitation is essential for safety. Dexmedetomidine has shown potential as an anxiolytic, but its feasibility and acceptability in this setting are underexplored. This quality improvement (QI) project aimed to evaluate the feasibility and nurse acceptability of dexmedetomidine anxiolysis in our patient population.

A retrospective chart review was conducted for pediatric patients who received dexmedetomidine during MIBG therapy between January and June 2023. Feasibility was assessed through adverse events, vital sign changes, and dose adjustments. Nurse acceptability was evaluated using a questionnaire adapted from the Theoretical Framework of Acceptability and a follow-up focus group.

Seven patients received the full MIBG dose with dexmedetomidine and experienced no adverse events. Minor, transient vital sign changes were noted, and all patients adhered to radiation safety protocols. Ten nurses completed the acceptability questionnaire; 100% reported that dexmedetomidine was easy to administer, promoted patient safety, and supported safe MIBG administration. Ninety percent found dexmedetomidine to be an acceptable anxiolytic. Focus group participants (n = 3) identified themes surrounding intravenous access challenges and the need for improved interdisciplinary communication.

Dexmedetomidine appeared to be a feasible and acceptable anxiolytic for pediatric patients receiving MIBG therapy in this small, single-unit QI project. Practice changes included a preadmission multidisciplinary huddle, interdisciplinary huddle requests for clinical concerns, and a dexmedetomidine administration standard operating procedure. This project underscores the importance of multidisciplinary collaboration and nurse feedback in refining clinical practice.

With the emergence of haploidentical transplantation, children with sickle cell disease (SCD) are increasingly pursuing hematopoietic stem cell transplantation (HSCT) as a curative treatment approach. However, suboptimal medication adherence remains a persistent challenge in both SCD and HSCT populations. Adherence to complex medication regimens is crucial to reducing the risk of severe complications and early mortality, yet no synthesis has evaluated patterns of adherence among patients with SCD post-HSCT.

We conducted an integrative review, searching PubMed, CINAHL, and PsycINFO from April 2025 to May 2025 for studies measuring medication adherence in children (≤21 years) with SCD and/or HSCT. Studies were included if they reported adherence rates and excluded if they involved adherence interventions or drug development trials.

Eighteen studies met inclusion criteria: 12 addressed SCD and 6 focused on HSCT. No studies specifically examined adherence in patients with SCD post-HSCT. Adherence rates to disease-modifying medications in SCD ranged from 10% to 89%, while post-HSCT adherence ranged from 40% to 73%. Nonadherence was associated with increased complications across both populations.

These findings highlight a critical research gap and provide a foundation for targeted adherence interventions. Addressing this gap is essential to advance nursing practice, improve adherence, and optimize clinical outcomes in pediatric hematology and HSCT care.