Allison J L'Hotta, Hannah E Rice, Amela Siječić, Allison A King, Beth M McManus, Amy Reando, Ashley J Housten
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Abstract
Background: Rehabilitation (i.e., physical, occupational, speech therapy) aims to optimize function and quality of life (QOL) but is not consistently integrated into oncology care. This study aimed to develop a rehabilitation information sheet informed by the rehabilitation experiences of children diagnosed with cancer before age 19 and their parents/caregivers.
Procedure: This mixed methods, primarily qualitative study was conducted at two US children's hospitals. Eligible participants included childhood cancer survivors (CCS) aged 12-25 years who were referred to one or more rehabilitation therapies following diagnosis. Parents/Caregivers were eligible if their child was diagnosed with cancer before age 19 and referred to rehabilitation. Participants completed a semi-structured interview in English. Qualitative findings guided the development of a rehabilitation information sheet. CCS and caregiver participants and oncology and rehabilitation clinicians at the study sites provided feedback on the information sheet through an electronic survey.
Results: Thirteen CCS, 33 parents/caregivers, and 36 clinicians participated. Participants described how engaging in rehabilitation promoted normalcy following a new pediatric cancer diagnosis and supported self-confidence and mental health. Participants wanted information about rehabilitation soon after the child's diagnosis and emphasized that they prioritized rehabilitation during cancer care. Common barriers to rehabilitation included treatment side effects, insurance, and outpatient scheduling, whereas clear communication and working with consistent providers supported engagement. Almost all individuals (99%) reported the information sheet was easy to understand and the amount of information was just right (86%).
Conclusions: Rehabilitation is highly valued by CCS and parents/caregivers, necessitating its integration into pediatric cancer care.
期刊介绍：
Pediatric Blood & Cancer publishes the highest quality manuscripts describing basic and clinical investigations of blood disorders and malignant diseases of childhood including diagnosis, treatment, epidemiology, etiology, biology, and molecular and clinical genetics of these diseases as they affect children, adolescents, and young adults. Pediatric Blood & Cancer will also include studies on such treatment options as hematopoietic stem cell transplantation, immunology, and gene therapy.
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