The family living with lung cancer protocol

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1. Resource Description

   "Cancer patients and their family members struggle to manage symptoms, which are often severe, based on their individual perceptions of the patient’s experience. When patient and family member differ in their perceptions (incongruence), symptom management becomes more difficult, and in some cases may lead to unnecessary patient suffering, and poor patient quality of life. Health care providers are increasingly involving family members as alternate or complementary reporters of patient symptoms based on their relationship with the patient and their role in providing care. When patients and family members differ in their perceptions of symptoms, health care providers may be faced with ethical challenges regarding treatment decisions and evaluation of the patient’s quality of life. Although the problem is recognized by researchers and clinicians, very few studies have been done to understand the phenomenon and its consequences for patients and families. The primary goal of the proposed study is to examine patient-family member incongruence in 125 lung cancer families over a 12-month period. In particular, the variables that predict patient-family member incongruence, and the effect of that incongruence on patient and family member satisfaction with the decision to shift focus from active treatment to symptom palliation only. Additionally, we will examine family member health and well-being, and their retrospective perceptions of the lung cancer patient 2 months post-bereavement. Results of this lung cancer study will contribute to our understanding of the impact of incongruence within the context of the lung cancer family, and will lead to interventions to maximize the supportive role of the family to reduce the burden of cancer and transition to palliative care, and to maximize symptom management and patient quality of life."

2. Contact

   Hiatt, Shirin Ojaghi, M.P.H., RN

3. Used by

   Karen Lyons Laboratory

4. Author

   Lyons, Karen, PhD