The purpose of this article was to explore the psychosocial implications of being diagnosed with a high-grade glioma, World Health Organization III/IV and IV/IV, to better inform healthcare providers and researchers of the patient experience. The information is the cumulative data collected from hundreds of patient interviews in a large metropolitan brain tumor clinic over a 7-year period. Three themes of loss emergedVloss of independence, loss of self, and loss of relationships. This information is presented on behalf of the patients for acknowledgement of their experience and for identification of the need for increased psychological and concrete services to better serve this population.
A private ListServ was created as a psychosocial intervention for the caregivers of the brain tumor patients in a large metropolitan cancer center. Caring for someone with a brain tumor can be quite challenging, and the day-to-day responsibilities restrict the amount of discretionary time allotted the caregiver. Consequently, they can become isolated and overwhelmed. It was conceived that, for convenience sake, a ListServ might be the solution to best serve this population. The hope being that sharing with their peers would lessen the isolation and validate their own experience, decreasing their fear and anxiety. This was all possible for less than a dollar a day.
The purpose of this article is to identify the experience of the patient with a World Health Organization grade III/IV and IV/IV brain tumor, and that of their family, to best understand how to treat them. It is the cumulative input of hundreds of patients and family members seen over a 20-year career of specialization at two teaching hospitals. No patient who has been diagnosed with a brain tumor, whether low grade, high grade, or benign, escapes totally unharmed because tumor existence, surgical removal, and/or toxicity of treatment combine to cause varying degrees of brain injury. Additional considerations are the variables of tumor location within the brain, the age of the patient, their premorbid intellectual capacity, and their fear and anxiety, for full understanding of the impact and the complexity of the tumor and treatment on the individual patient. The mental health provider's mandate in caring for this population is threefold: first, provide hope in what patients feel is a hopeless situation; second, serve as witness to their experience and acknowledge and validate the changes and loses that occur; and third, create empowerment in what seems a helpless situation. For the purposes of this article, further reference to brain tumors will be World Health Organization grade III/IV and IV/IV.
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