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Hope Center
established to address the unmet needs of patients & families affected by HIV in Knox & surrounding counties |
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Hope Center Mission and Goals
Cumulative Patient Demographics
The non-profit Hope Center opened on 7-North in 1996 at Fort Sanders Regional Medical Center, where more than 2000 adults and children have received supportive services at no charge to them, their family or caregivers. Among this group, 625 individuals have died.
Throughout each year, at least 400 dedicated community
volunteers provide valuable help with HIV education, fund-raising
events, Caregiving team, World AIDS Day displays and holiday activities.
Cumulative volunteer hours increased from 1,028 in 1996 to more than
5,000 by 2011.
Age Range of Patients Served:
Reasons for Support:
– My life is over;
there is no such thing as a future.
– Side effects can make living nearly
unbearable and certainly questionable.
– It seems like everyone is busy.
They don't have time for me. Care Directives and confidentiality)
(After the diagnosis)
§ Being abandoned by family § Fear of illness discovery and stigma – especially in the workplace § Anxiety about relationships and intimacy § Loss of control and independence; disability § Financial distress; ending up on the street § Mental health problems, depression, loneliness, anxiety § Treatment factors - Each pill is a reminder of incurable disease § Denial or false sense of security - So what's the big deal? We have pills for this now! § Physical Attractiveness Stereotype - We all know what is beautiful is good § Disfigurement, hair loss, skin lesions, fat redistribution; wasting disease § Central lines, "ports"; colostomy bags; catheters, wheelchairs, walkers § Spiritual issues - So what makes you think I'm not right with God? - I'm supposed to be able to accept my death and they won't even let me say the word--I don't have the energy to help them accept their own mortality. § Peripheral neuropathy, arthritis, headaches, nausea, vomiting chronic diarrhea and profound fatigue. § Opportunistic infections – cancer, meningitis, lymphoma, PML, MAC, PCP, histoplasmosis, cytomegalovirus … § Becoming old (prematurely), fear of losing intellect – memory loss, dementia § Unmet life goals, loss of identity, loss of self § Separation anxiety, grief & perpetual bereavement § Hopeful dying - I want to die with some life left
* Source: J. Gillian (1996). The Nature of Hope among Men and Women Living with HIV and AIDS: A Two-Year Phenomenological Study. Doctoral Dissertation, University of Tennessee-Knoxville. All rights reserved.
Examples of Support Services:
Referrals. When requested, resource information about primary care physicians, specialists, health professionals, and agency assistance is provided.
Jane & John Doe. There sometimes is a need to assist individuals through health care services with anonymity to ensure confidentiality and compliance with HIPAA guidelines.
Medical decision-making and treatment education. Patients and caregivers ask for supportive discussion in making decisions related to treatment throughout the course of the disease. Of particular importance is understanding complex HIV treatment regimens. Education ensures readiness, fosters adherence, and limits treatment errors.
Legal protection for decisions concerning quality of life. Provisions for safeguarding individual wishes through Advance Care Directives are discussed as soon as possible. Hope Center is fortunate to have volunteer legal counsel available on a limited basis to offer assistance.
Liaison between health department, physicians, judicial systems, community hospitals, and mental health facilities. Hope Center serves as a supportive resource for individuals, services, and organizations asking about the needs, care, and treatment of individuals with HIV.
HIV Infections among minorities. Care must be taken to address HIV in the context of individual cultural norms and offer education and care that is compatible with patients' diverse values, beliefs, and cognition.
Anticipatory Care. Hope Center provides a holistic approach to education, advocacy, end-stage care, and bereavement support. A critical component of the Center's holistic model is the philosophy of anticipatory care. Its purpose is to recognize potentially threatening problems before hospitalization or prolonged medical intervention is required. This model stresses encouragement through empathy, dignity, and active listening. An example follows.
YaBau's Story (YaBau is a pseudonym.)
After her mother was murdered on the front porch of her home in West Africa, 25-year-old YaBau escaped to America with help from her aunt who had been educated in the United States. YaBau had to leave behind her 2-year-old daughter, Kashe, who had not been well from birth. YaBau was referred to Hope Center by a counselor at a local college where she was in a work-study program. Her medical exam had revealed the human immunodeficiency virus (HIV) and she needed help with medical care referrals. Actually, she needed every kind of support we could muster.
Our first visit together was devastating for her. She always feared she had "the illness," not epilepsy and migraines, for which she received medications from the village doctor. (The word AIDS was never used in her village.) YaBau's suffering when she spoke of her little girl was unbearable. Spasms of grief alternated with shame, then stoicism. Kashe had died. YaBau said she knew in her heart that her mother was murdered by her abusive husband. He was also the father of her baby girl—YaBau was given "the illness" by him. She would never be able to return to her home. She would perish if her illness were discovered. She taught us about her culture and showed extraordinary courage. YaBau spent the next two years learning about the virus, what it did to her body and how she could live with AIDS even though it is incurable. She chose to keep her illness a secret but she felt safe at the Hope Center. The Oliver & Company care team volunteers protected her privacy. They provided food vouchers, shoes, a warm coat, clothing, and school supplies. When there were problems with her student visa, Hope Center referred her to an immigration attorney who assisted her on a pro bono basis.
During her visits to the Hope Center, creative translation reduced her struggle with medical jargon. She became well-educated about HIV medications, treatment protocols and diagnostic exams. Even with appropriate healthcare referrals, however, she suffered from several serious infections. Always courageous, YaBau went to work or class even when she was sick. "As long as I get on my feet and walk," she said, "I want to pay my own way." Eventually her depression faded, she became stronger and talked about joining a female cousin in New York who also fled from her village in Africa. We continue to hope that she is safe.
Why and How the Hope Center Began
Hope Center was established in 1996 in response to a doctoral study conducted by Jeannie Gillian, Ph.D. at the University of Tennessee-Knoxville. The purpose of her study was to enhance understanding of the perceived nature of hope among individuals living with the human immunodeficiency virus who were advised that advanced HIV is not survivable. In-depth repeated interviews were conducted with 35 research participants over 24 months in naturalistic settings. Analysis of the phenomenological interviews revealed the unexpected finding that fatalistic perceptions of a diagnosis of Advanced HIV were not shared by those who live with the virus. The patients defined hope as the belief in possibilities, regardless of illness progression. They described 12 specific themes related to the influence of hope on emotional and physical health, stigma, self-esteem and HIV care. These findings suggest that offering a context for hope is a critical aspect of caring for people with this challenging illness.
With assistance from Dr. Richard Rose, Fort Sanders Foundation and Covenant Health's Center for Community Health, Hope Center was established to address individual needs using a patient-focused hope model as defined by the research participants. Covenant Health supports the Center by providing the hospital space needed to offer supportive services at no charge to families affected by HIV and other serious illnesses.
The "Hope Model" of Care
The Hope Model supports both the anticipatory care and patient self-management approach. The model of anticipatory care is unique to the Hope Center and is a one-of-a-kind program in the region. Its goal is to identify problems, concerns and needs that make up a patient’s medical and social situation. To the extent possible, challenges and potential problems are addressed throughout the illness to avoid unnecessary health complications and stress. Left unchecked, complications typically result in stressful medical procedures and expensive hospitalizations.
The self-management approach focuses on facilitating positive survival strategies. The key to a patient’s successful management of his or her illness lies in the ability to learn self-directed skills that promote confidence, independence, and wellness. For example, newly diagnosed patients need a place to start the task of learning to live with a life-changing illness. Hope Center programs offer ongoing supportive care, education and resource referrals that enhance self-empowerment. Our goal is to eventually hear patients state, with confidence, “I know how to take care of myself. I know what I need to do to survive or to live as long as I can.”
The Hope Model requires a pragmatic approach in the administration of its patient-centered programs. By definition, patient-centered programs focus on the patient’s perceptions of illness and practical needs, rather than the preconceived ideas of others who are not living with the disease. This means that the patients are viewed as the authorities on how they live with HIV and other serious illnesses. With a focus on empathy, dignity, quality of life, spirituality, and hope, the Hope Model begins where the patient is with their unique circumstances and works from that point in partnership with the patient to enhance motivation and develop flexible coping strategies throughout the illness. ©Copyright 2012 Hope Center All Rights Reserved Hope Center - 1901 W. Clinch Avenue - Knoxville, TN 37916 |
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