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Cynthia Fletcher


A brain tumor diagnosis is traumatic and has a devastating impact upon the caregiver and the family unit. The effects of the tumor growth and treatment often cause significant neurologic injury and dramatically affect the quality of life (QOL) for the patient and their entire family unit. Caregivers are constantly challenged to provide care, yet they feel untrained and underprepared as they struggle to adjust to new roles and responsibilities. The purpose of this study is to gain an understanding of the lived experiences of caregivers of individuals with primary benign brain tumor (PBBT). An interpretive phenomenological analysis approach was used to explore the experiences of 10 caregivers. Bowen's family systems theory provided an understanding of how families respond to changes in their family system resulting from a member of the family having a PBBT. A nonprobability sampling technique was used to recruit participants from 2 virtual support groups. Data were collected through semistructured interviews guided by an interview template. Interviews were transcribed and analyzed following the Smith tradition of inquiry until data saturation was reached. Three major themes emerged from the data: experiencing new challenges, responding to initial diagnosis, and facing challenges with family and friends. Caregivers experience a wide variety of responsibilities that are physically and psychologically challenging, which can negatively affect the QOL for the caregiver and the patient. These findings can be used by healthcare providers to identify resources to alleviate the unanticipated demands caregivers experience. Future studies are needed to explore how best to decrease challenges experienced by caregivers of individuals with PBBT.

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