"Their Bodies Just Give It Away": A Qualitative Study of Pain Assessment in the Context of Pediatric Hematopoietic Stem Cell Transplantation Therapy.

Background: Children undergoing hematopoietic stem cell transplantation (HSCT) are vulnerable to pain.

Objective: This study aimed to examine how healthcare providers and parents assessed pain and what contextual factors influenced their pain assessment practices for children hospitalized after allogeneic HSCT therapy.

Methods: A qualitative case study was conducted in a tertiary level pediatric HSCT unit in 2 phases. Semistructured interviews with parents were conducted at 30 and 90 days after HSCT therapy. Healthcare providers participated in naturalistic observations of pain-related care provided to children during their hospitalization for HSCT therapy and a semistructured interview.

Results: The assessment of pain after transplantation by healthcare providers and parents was predominantly reliant on the observation of children for behaviors indicative of pain, rather than the application of validated pain assessment tools. Without formal measures of the pain experience, judgments regarding the severity of children's pain were influenced by the context of high acuity of care posttransplantation and the emotional responses of healthcare providers and parents from bearing witness to children's pain.

Conclusion: Pain assessments mostly reflected children's ability to tolerate pain, rather than a genuine measurement of how significantly pain impacted the child.

Implication For Practice: This study has emphasized how the assessment of pain for children hospitalized during HSCT therapy is limited by the complexity of the clinical environment. It is recommended that validated methods of assessing pain by healthcare providers and parents be implemented into clinical practice to ensure children's pain is visible.