Parenting while living with advanced cancer: A qualitative study

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/participants 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; (4) and parental identity influencing decision-making about treatment. Parental functional status influenced not only physical responsibilities but also intensified parenting psychological concerns. Conclusions 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.

Maternal breast cancer and communicating with children: A qualitative exploration of what resources mothers want and what health professionals provide

“…Research exploring communication with children about a parental cancer diagnosis has focused on the experiences of parents with advanced cancers (Forrest, Plumb, Ziebland, & Stein, ; Kennedy & Lloyd‐Williams, ; Park et al, ), parents with adolescent children (Huizinga, Visser, van der Graaf, Hoekstra, & Hoekstra‐Weebers, ) and on children's experiences and needs (Ellis, Wakefield, Antill, Burns, & Patterson, ; Furlong, ; Thastum, Johansen, Gubba, Olesen, & Romer, ). There has been little research on parents’ communication with younger children (Furlong, ) or the needs of parents with younger children when the parent is diagnosed with cancer treated with curative intent.…”

Disrupted biographies and balancing identities: A qualitative study of cancer patients’ communication with healthcare professionals about dependent children

“…Studies also show that maximising time spent with children and preserving a role as a parent are important concerns underlying patients’ preferences (Check et al, ; Zaider, Sally, Terry, & Davidovits, ). Such patients are concerned about how to maintain parental responsibilities and how their illness and death will impact on their children (Park et al, ). Patients with parental responsibility struggle to balance their roles as a parent with being a seriously ill patient, agonising, for example, about whether to spend time with their children or to rest to combat their illness (Bell & Ristovski‐Slijepcevic, ; Morris, Martini, & Preen, ).…”

“…Seriously ill patients with parental responsibility experience an increased level of psychosocial distress, major depressive disorder and generalised anxiety compared to peers (Muriel et al, 2012;Park et al, 2016). Patients with parental responsibility tend to make more aggressive treatment decisions, including receiving highly toxic treatment, and less often initiate advance care planning, write "donot-resuscitate" (DNR) orders or leave a living will (Nilsson et al, 2009;Park et al, 2017;Yellen & Cella, 1995).…”

Understanding health‐related quality of life in adult women with metastatic cancer who have dependent children

“…Individuals with advanced cancer who have dependent children experience unique challenges to their health‐related quality of life (HRQOL) and psychological functioning. They have parenting concerns about the current and future impact of their illness on their children, uncertainty regarding optimal illness‐related communication with their children, and profound anguish that they may not raise their children into adulthood . Cross‐sectional studies have suggested that parents with advanced cancer have high rates of anxiety and depressive symptoms, and higher rates of mood disorders in comparison with patients without dependent children …”

“…They have parenting concerns about the current and future impact of their illness on their children, 4,5 uncertainty regarding optimal illness-related communication with their children, 5 and profound anguish that they may not raise their children into adulthood. [5][6][7] Cross-sectional studies have suggested that parents with advanced cancer have high rates of anxiety and depressive symptoms, 4,8 and higher rates of mood disorders in comparison with patients without dependent children. 9 Parenting concerns also may influence cancer treatment decision making.…”