"There's no playbook for when your kid has cancer": Desired elements of an electronic resource to support pediatric cancer communication.

Autor: Greenzang KA; Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.; Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.; Division of Pediatric Hematology/Oncology, Boston Children's Hospital, Boston, Massachusetts, USA., Scavotto ML; Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts, USA., Revette AC; Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts, USA., Schlegel SF; Division of Pediatric Endocrinology, Boston Children's Hospital, Boston, Massachusetts, USA., Silverman LB; Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.; Division of Pediatric Hematology/Oncology, Boston Children's Hospital, Boston, Massachusetts, USA., Mack JW; Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.; Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.; Division of Pediatric Hematology/Oncology, Boston Children's Hospital, Boston, Massachusetts, USA.
Jazyk: angličtina
Zdroj: Pediatric blood & cancer [Pediatr Blood Cancer] 2023 Mar; Vol. 70 (3), pp. e30198. Date of Electronic Publication: 2023 Jan 05.
DOI: 10.1002/pbc.30198
Abstrakt: Introduction: Acute lymphoblastic leukemia (ALL), the most common childhood malignancy, has a relatively favorable long-term prognosis. Yet the complexity of treatment and the emotionality of the diagnosis leave families feeling unprepared for many aspects of therapy. This qualitative study aimed to identify desired elements and format of a communication resource to support patients and families facing a diagnosis of ALL.
Methods: Semi-structured interviews of 12 parents of children receiving ALL treatment, 10 parents of survivors of ALL, and eight adolescent and young adult (AYA) survivors of ALL were conducted between February and June 2021. The interviews focused on communication experiences throughout treatment and identified domains to be addressed in a resource in development.
Results: All participants supported the development of an interactive, electronic health (eHealth) resource to help navigate ALL treatment. They felt a website would be helpful in addressing information gaps and mitigating pervasive feelings of overwhelm. Participants specifically sought: (a) information resources to address feelings of cognitive overload; (b) practical tips to help navigate logistical challenges; (c) clear depictions of treatment choices and trajectories to facilitate decision-making; and (d) additional psychosocial resources and support. Two overarching themes that families felt should be interwoven throughout the eHealth resource were connections with other patients/families and extra support at transitions between phases of treatment.
Conclusions: A new diagnosis of ALL and its treatment are extremely overwhelming. Patients and families unanimously supported an eHealth resource to provide additional information and connect them with emotional support, starting at diagnosis and extending throughout treatment.
(© 2023 Wiley Periodicals LLC.)
Databáze: MEDLINE
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