Parenting While Living with Advanced Cancer: A Qualitative Study

• Authors: Eliza M. Park, University of North Carolina; Devon K. Check, University of North Carolina; Mi-Kyung Song, Emory University; Katherine E. Reeder-Hayes, University of North Carolina; Laura C. Hanson, University of North Carolina; Justin M. Yopp, University of North Carolina; Donald L. Rosenstein, University of North Carolina; Deborah K. Mayer, University of North Carolina
• Journal Title: Medycyna Paliatywna / Palliative Medicine
• Volume: Volume 31, Number 3
• Publisher: Termedia Publishing | 2017-03-01, Pages 231-238
• Type of Work: Article | Post-print: After Peer Review
• Publisher DOI: http://doi.org/10.1177/0269216316661686
• Subjects: Health Sciences, Nursing
• Keywords: Science & Technology; Life Sciences & Biomedicine; Health Care Sciences & Services; Public, Environmental & Occupational Health; Medicine, General & Internal; General & Internal Medicine; Parents; parenting; cancer; neoplasm; ENHANCING CONNECTIONS PROGRAM; BREAST-CANCER; CHILDREN; FAMILY; EXPERIENCES; DEATH; CHALLENGES; IMPACT; CARE

Abstract

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.