Evaluation of an educational program for the caregivers of persons diagnosed with a malignant glioma

Rosemary Cashman, Lori J. Bernstein, Denise Bilodeau, Geoff Bowett, Barbara Jackson, Masoud Yousefi, Anca Prica, James Perry

Abstract


Background: Caring for a loved one with a malignant glioma can be a formidable responsibility. The guarded prognosis, side effects of treatments, and changes in brain function, personality and behaviour pose unique challenges in care provision by family members. It is rare that institutions provide educational programs for caregivers.

Purpose: To evaluate the impact of providing information in an educational program to caregivers of patients diagnosed with a malignant glioma.

Methods: A structured educational program for caregivers of brain tumour patients was developed based upon multidisciplinary expert opinion and caregiver feedback. Twenty-four caregiver participants were enrolled in the program. Knowledge was assessed before, immediately following, and four to six weeks following the program. Open-ended questions were used to explore the caregivers’ experiences, as well as additional benefits derived from the program.

Results: Knowledge scores on testing immediately after the program and four to six weeks following the program were statistically significantly improved from baseline testing, although there was a decline in scores four to six weeks after the program. These findings demonstrate effective knowledge transfer (recall of the information) immediately after the education program and four to six weeks later. Specific qualitative and quantitative data serve as a basis for understanding caregivers’ needs and experiences.


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