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Lifelong friendships among families of mesothelioma patients often spring from a support group run by BWH social worker Charlene Haouiliya, LICSW. Four wives of patients from different states even plan a regular cruise together after bonding in the group several years ago.
“For many, this support group is the first time they’ve met anyone else going through the same thing,” said Haouiliya, who, along with Chaplaincy, leads the family support group and other groups to help patients and families cope emotionally with mesothelioma, a form of cancer usually caused by exposure to asbestos.
Such supports are critical in eliminating the isolation patients feel in battling this rare disease, which affects about 3,000 people per year in the U.S.
“We ensure patients are connected to an entire support team right here from the beginning, and they appreciate that,” Haouiliya said. “It is a very hopeful environment for patients and families to come into.”
During an orientation for newly diagnosed patients, Haouiliya and chaplains inform patients of available resources, including lodging, and discuss the emotional effects of the disease. By meeting with patients at this orientation prior to their surgeries, Haouiliya has a chance to understand how patients are coping. “I can start building a relationship with them before their surgeries, and they get to know me as a person whom they can call with questions after they go home,” she said.
Many former patients attend and talk to new patients about their experiences. Haouiliya also leads a weekly patient support group, where patients connect with each other and learn about the recovery process.
“Charlene’s role is critical to the mission of the International Mesothelioma Program,” said David Sugarbaker, MD, chief of Thoracic Surgery and founder of the International Mesothelioma Program. “Her caring professionalism sets a high standard for all of us to follow.”
BWH takes this opportunity to honor its talented social workers, who collaborate with patients, families and interdisciplinary staff throughout the hospital community to provide psychosocial support, counseling, advocacy, education and resource referrals for continuity of care. In the past year, social workers have worked on initiatives including a parent advisory group in the NICU, a special service honoring families of organ donors, relaxation techniques for pre-op pateints, formalizing bereavement follow-up for families and initiating social work services at 850 Boylston St. and the Weiner Center.