Gaps in Parental Understanding of Sleep Disturbances During Maintenance Therapy for Pediatric Acute Lymphoblastic Leukemia

Author:

Zhou Eric S.123ORCID,Valenzuela Ariana F.4,Robbins Rebecca3,Page Jessica M.25,Bona Kira467

Affiliation:

1. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA

2. Department of Neurology, Boston Children's Hospital, Boston, MA, USA

3. Division of Sleep Medicine, Harvard Medical School, Boston, MA, USA

4. Department of Pediatric Oncology and Division of Population Sciences, Dana-Farber Cancer Institute, Boston, MA, USA

5. Department of Psychiatry, Boston Children's Hospital, Boston, MA, USA

6. Department of Pediatrics, Division of Hematology/Oncology, Boston Children's Hospital, Boston, MA, USA

7. Department of Pediatrics, Harvard Medical School, Boston, MA, USA

Abstract

Background: Acute lymphoblastic leukemia (ALL) is the most common cancer in childhood, with survival rates approaching 90%. Sleep disturbance is common among ALL patients, often developing during the initial stages of chemotherapy treatment. While there have been significant efforts to understand and intervene in this issue during survivorship, there is far less research on children who are actively receiving treatment. In the current study, we sought to better understand the parent's experience in the sleep domain during maintenance therapy, including their perceptions of how their child's medical team had managed sleep disturbances, and recommendations for how to improve sleep management. Method: Fifteen parents of pediatric ALL patients (aged 4–12 years) completed semistructured interviews. Interview content was analyzed using a multistage thematic analysis. Results: Parents consistently expressed feeling unprepared to manage the sleep disruptions that arose during treatment, often reporting that they did not recall being told this would be a side effect. They were enthusiastic about learning how to improve their child's sleep, though they did not want pharmacotherapeutic interventions or additional medical/psychosocial appointments to address this. Conclusion: Despite consistent provider communication on sleep, parents report limited knowledge of the issue. This provides an obvious intervention target to improve treatment-related sleep disturbances. Clear messaging may help direct parents’ attention and expectations regarding their child's treatment and potential for disturbed sleep, possibly in the form of a behavioral intervention that empowers parents with information about how to support their child's sleep health while they are undergoing treatment for ALL.

Funder

American Cancer Society

National Cancer Institute

Publisher

SAGE Publications

Subject

Pediatrics,Oncology (nursing),Advanced and Specialized Nursing,General Medicine

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