Mesothelioma research tends to focus in on the hard science of the disease: biomarkers, cells, the impact of specific medications or doses of radiation. By contrast, far fewer studies are done on the real-life impact that the disease has on the lives of its victims – how facing a rare and fatal form of cancer that is entirely preventable affects the patient, and how those who treat them can best respond. Now, a clinical nurse specialist in the United Kingdom has been awarded a research grant of $10,500 to study the realities of living well with cancer – and if that is even possible with a challenging disease like malignant mesothelioma.
Karen Lord is a clinical nurse specialist whose primary focus is treating patients diagnosed with malignant mesothelioma at Glenfield Hospital in Leicester in the United Kingdom. The research grant was awarded by the National Lung Cancer Forum for Nurses and Mesothelioma UK, a national philanthropic group dedicated to improving care for those afflicted with the asbestos-related disease. Speaking of the grant, Ms. Lord said, “It is so important to understand how people affected by mesothelioma can ‘live well.’”
Speaking of Mesothelioma UK’s motivation for funding this particular study, head of services Liz Darlison pointed out that understanding how best to care for those with long-term or terminal conditions is a priority for all medical professionals, as well as for the government, and that far more needs to be learned in the face of the “little research” that has been done. “This study will provide very useful clinical evidence to influence care and services, and help patients,” Darlison said. “We wish Karen every success and look forward to helping to evaluate and disseminate findings in due course.”
One of the study’s goals is a comparison between mesothelioma and other types of cancer: where others have expressed a hope for support and a need for self esteem, it is unknown whether that is the same thing expressed by those with mesothelioma. Ms. Lord will begin by speaking directly with mesothelioma patients, their family members and other caregivers to learn how they define living well. Her focus will be on whether that information differs from that of other cancer patients. She will later move on to form focus groups in order to create a guide that patients, the healthcare professionals and the families that provide their moral anchors can use going forward.
Whether you are a mesothelioma patient, a caregiver or family member of someone diagnosed with this rare and fatal form of cancer, you need all the support you can get. Contact the Patient Advocates at Mesothelioma.net at 1-800-692-8608 today to learn how we can help.
