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.
Objective Parents with life-limiting illness anticipate the loss of their parental role and the long-term consequences of their illness on their children. The purpose of this study was to examine relationships between parenting concerns, quality of life (QOL), and symptoms of depression and anxiety in parents with advanced cancer who have dependent children. Methods Sixty-three parents diagnosed with a Stage IV solid malignancy completed the Hospital Anxiety Depression Scale (HADS), Parenting Concerns Questionnaire (PCQ), and Functional Assessment of Cancer Therapy - General (FACT-G). The Medical Outcomes Study Social Support Survey (social support) and Eastern Cooperative Oncology Group (ECOG) performance status were assessed as potential covariates. We performed descriptive statistics and multivariable linear regression models for depression, anxiety, and QOL measures. Results Mean PCQ score was 2.3 (SD 0.9), reflecting mild to moderate parenting concerns. Average depression and anxiety scores were 6.0 (SD 4.2 and 8.2 (SD 3.9), respectively. PCQ scores were associated with depressive symptoms (r = 0.46, p < 0.001), anxiety symptoms (r = 0.52, p < 0.0001) and QOL scores (r = −0.60, p < 0.001). The relationship of PCQ scores to anxiety symptoms (B = 1.5 p = 0.016) and QOL (B = −5.7, p = 0.02) remained significant after controlling for ECOG status, social support, and treatment status. Conclusions Parenting concerns are associated with anxiety and depressive symptoms and worse QOL in parents diagnosed with advanced cancer. Further studies that evaluate how parental status affects coping and psychological distress in advanced cancer are needed.
Women are at increased risk of developing mood disorders during the postpartum period, and poor postpartum sleep may be a modifiable risk factor for the development of depression. This longitudinal study investigated the relationship between sleep variables and postpartum depression symptoms using wrist actigraphy and self-report surveys. Twenty-five healthy primiparous women were recruited from their outpatient obstetricians’ offices from July 2009 through March 2010. Subjects wore wrist actigraphs for 1 week during the third trimester of pregnancy and again during the 2nd, 6th, 10th, and 14th weeks postpartum while completing sleep logs and sleep surveys. Subjective assessments of mood were collected at the end of each actigraph week. Subjective sleep assessments were strongly predictive of depression severity scores as measured by the Edinburgh Postnatal Depression Scale (EPDS) across all weeks (p<0.001). Actigraphic measures of sleep maintenance, such as sleep fragmentation, sleep efficiency, and wake time after sleep onset, were also significantly correlated with EPDS scores postpartum. However, there was no relationship between nocturnal sleep duration and EPDS scores. This study provides additional evidence that poor sleep maintenance as measured by wrist actigraphy, rather than lesser amounts of sleep, is associated with EPDS scores during the postpartum period and that subjective assessments of sleep may be more accurate predictors of postpartum depression symptoms than wrist actigraphy. It also supports the hypothesis that disrupted sleep may contribute to the development and extent of postpartum depression symptoms.
In this study, a considerable proportion of young women with newly diagnosed MBC experienced anxiety symptoms, although depression was less common. Future strategies focused on distress reduction in young MBC patients should focus on physical symptom management as well as anxiety identification and management.
Background As life expectancy for cystic fibrosis (CF) has increased in recent decades, more individuals with CF are becoming parents. The objectives of this study were to describe the parenting and reproductive health concerns of individuals with CF and to identify the psychosocial and educational needs related to parenthood with CF. Methods Twenty adults with CF, including parents and non‐parents, participated in one‐on‐one, semi‐structured interviews about reproductive health and parenting. Questions pertained to reproductive health knowledge, psychosocial adaptation to CF related to fertility and parenthood, parenting concerns in the context of CF, and psychosocial care needs. We performed thematic content analysis on interview transcripts and descriptive statistical analysis on participant demographics and health variables. Results A majority of participants (ten women and ten men, of whom half were parents) described their health as “stable” and “good/fair”; median FEV 1 was 66% predicted (range, 30‐105). Participants shared a range of experiences related to reproductive health discussions with CF care providers and expressed concerns about pregnancy, infertility, and adoption. Parents and non‐parents expressed concerns about balancing roles as parent and patient, the impact of anticipated health decline and early mortality on children, and communication with children. Participants identified a need for earlier, improved education for potential parents and resources for parents with CF. Conclusions Individuals with CF may not receive sufficient CF‐related reproductive health education, and they have wide‐ranging concerns about the intersecting roles of patient and parent. Results from this study can provide guidance for CF care providers to improve their understanding and response to the needs of individuals and families affected by CF.
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