Eliza M Park1, Devon K Check2, Mi-Kyung Song3, Katherine E Reeder-Hayes4, Laura C Hanson5, Justin M Yopp1, Donald L Rosenstein1,6, Deborah K Mayer7. 1. 1 Department of Psychiatry, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 2. 2 Division of Health Policy and Management, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 3. 3 Center for Nursing Excellence in Palliative Care, Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, GA, USA. 4. 4 Division of Hematology-Oncology, Department of Medicine, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 5. 5 Palliative Care Program, Division of Geriatrics, Department of Medicine, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 6. 6 Department of Medicine, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 7. 7 School of Nursing, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
Abstract
BACKGROUND: Patients with advanced cancer who have dependent children are an important population with a life-limiting illness and high levels of psychological distress. Few studies have addressed the experience of being a parent with advanced cancer and their potential palliative needs. AIM: To describe the experience of living with advanced cancer as a parent, including illness experience, parental concerns, and treatment decision making and to explore whether these experiences differ by their functional status. DESIGN: We conducted a cross-sectional, qualitative study using in-depth, semi-structured interviews. Data were analyzed using thematic content analysis. SETTING AND PARTICIPANTS: A total of 42 participants with metastatic cancer and with at least one child under the age of 18 years were recruited from a comprehensive cancer center. 25 participants were rated as having high functional status (the Eastern Cooperative Oncology Group (ECOG) Performance Status Scale = 0-1) and 17 with low functional status (ECOG=2-4). RESULTS: We identified four themes regarding the experience of being a parent with advanced cancer: (1) parental concerns about the impact of their illness and death on their children, (2) "missing out" and losses of parental role and responsibilities, (3) maintaining parental responsibilities despite life-limiting illness, and (4) parental identity influencing decision making about treatment. Parental functional status influenced not only physical responsibilities but also intensified parenting psychological concerns. CONCLUSION: Parents with metastatic cancer may have unique palliative care needs as they experience parenting concerns while managing the psychological and physical demands of advanced cancer.
BACKGROUND: Patients with advanced cancer who have dependent children are an important population with a life-limiting illness and high levels of psychological distress. Few studies have addressed the experience of being a parent with advanced cancer and their potential palliative needs. AIM: To describe the experience of living with advanced cancer as a parent, including illness experience, parental concerns, and treatment decision making and to explore whether these experiences differ by their functional status. DESIGN: We conducted a cross-sectional, qualitative study using in-depth, semi-structured interviews. Data were analyzed using thematic content analysis. SETTING AND PARTICIPANTS: A total of 42 participants with metastatic cancer and with at least one child under the age of 18 years were recruited from a comprehensive cancer center. 25 participants were rated as having high functional status (the Eastern Cooperative Oncology Group (ECOG) Performance Status Scale = 0-1) and 17 with low functional status (ECOG=2-4). RESULTS: We identified four themes regarding the experience of being a parent with advanced cancer: (1) parental concerns about the impact of their illness and death on their children, (2) "missing out" and losses of parental role and responsibilities, (3) maintaining parental responsibilities despite life-limiting illness, and (4) parental identity influencing decision making about treatment. Parental functional status influenced not only physical responsibilities but also intensified parenting psychological concerns. CONCLUSION: Parents with metastatic cancer may have unique palliative care needs as they experience parenting concerns while managing the psychological and physical demands of advanced cancer.
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