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Background: Parents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for their child. The challenges these parents are confronted with may lead to specific care needs. In this paper we explore the spiritual dimension of caring for a child with a life-threatening condition from the parents perspective., Methods: We held an exploratory qualitative study with in-depth interviews with parents of children (0-21) with life-threatening conditions. Interviews were transcribed and subsequently thematically analyzed., Results: Twenty-four parents of 21 children participated in the interviews. The spiritual dimension is an important, although not always visible, aspect of the experience of parents dealing with their child's illness. The main domains with regard to spirituality were: 1) identity; 2) parenthood; 3) connectedness; 4) loss or adjustment of goals; 5) agency; 6) navigating beliefs and uncertainties; and 7) decision-making. Parents also reflected on their spiritual care needs., Conclusion: The spiritual dimension plays a central role in the experiences of parents who care for children with life-threatening conditions, but they receive little support in this dimension, and care needs often go unnoticed. If we want to provide high-quality pediatric palliative care including adequate spiritual support for parents, we should focus on the wide range of their spiritual experiences, and provide support that focuses both on loss of meaning as well as on where parents find growth, joy or meaning., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Context: Although parents experience grief when confronted with their child's deterioration and imminent death, most bereavement care is focused on supporting parents after child loss. Insight into intentions and strategies of the health care professionals (HCPs) in preloss care during the end of life is still lacking., Objectives: To create a starting point for improvement of preloss care, this study explores HCPs' experiences with providing support aimed at parental feelings of grief during the child's end of life., Methods: Exploratory qualitative research using individual semistructured interviews with clinicians in pediatrics and neonatology in hospital and homecare settings. Data were thematically analyzed by a multidisciplinary team., Results: Nineteen HCPs participated. HCPs tried to ensure that parents could reflect on the care received as concordant to their preferences and were not hindered in their bereavement as a consequence of their professional actions. Strategies included maximizing parental presence, enabling parental involvement in decision making, and ensuring a dignified death. While using these strategies, HCPs faced several difficulties: uncertainty about the illness course, unpredictability of parental grief responses, and being affected themselves by the child's imminent death. It helped HCPs to develop a bond with parents, find comfort with colleagues, and making joint decisions with colleagues., Conclusion: HCPs strive to improve parental coping after the child's death, yet apply strategies that positively influence parental preparedness and well-being during the end of life as well. Individual HCPs are left with many uncertainties. A more robust approach based on theory, evidence, and training is needed to improve preloss care in pediatrics., (Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.)

Context: Anxiety in patients with cancer is highly prevalent; yet it remains underestimated and inadequately assessed. Little is known about predictors for anxiety in hospitalized patients with cancer. Insight in predictors should improve recognition and enable a targeted approach., Objectives: To determine the prevalence of anxiety and predictors for anxiety in hospitalized patients with cancer at different stages of disease., Methods: A cross-sectional analysis of patients with cancer admitted to the Utrecht University Medical Center in 2015-2018 was conducted. The Utrecht Symptom Diary, an adapted Dutch version of the Edmonton Symptom Assessment System, was used to assess symptom burden on a numeric rating scale (0 = no symptom and 10 = worst possible symptom). Scores ≥4 were considered clinically relevant. All patients completed the Utrecht Symptom Diary as part of routine care. The first questionnaire after admission was selected. Using multivariable linear regression, the predictive value of potential predictors on anxiety was analyzed., Results: In total, 2144 patients were included, of which 22% reported clinically relevant anxiety. The prevalence of anxiety was highest (36%) in patients receiving symptom-directed palliation only. In the total group, female gender, younger age, depressed mood, sleeping problems, dyspnea, and cancer of the head and neck were predictive of anxiety. Throughout all stages of disease, depressed mood was consistently the strongest predictor., Conclusion: We found a high prevalence of anxiety in hospitalized patients with cancer. It is recommended to explore anxiety in hospitalized patients with cancer, in particular when they experience depressed mood. Structural use of a symptom diary during hospitalization facilitates the recognition of anxiety and concurrent symptoms., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Nearing death, hospice patients are increasingly unable or unwilling to self-report their symptom intensity and rely on nurses' assessments., Objectives: We hypothesized that concordance between patients' and nurses' assessments of symptom intensity improves over time., Method: A prospective longitudinal study was conducted from January 2012 to June 2015 using dyads of patient- and nurse-reported outcome measures, collected in daily hospice practice in the first three weeks after admission. Main outcomes were symptom intensity and well-being, measured using the Utrecht Symptom Diary (USD) and USD-Professional. Absolute concordance was the proportion of dyads with no difference in scores between USD and USD-Professional per week after admission. For agreement beyond chance, the squared weighted Kappa for symptom intensity and the one-way agreement intraclass correlation coefficient for well-being were used., Results: The most prevalent symptoms, fatigue, dry mouth, and anorexia also had the highest intensity scores assessed by patients and nurses. Symptom intensity was underestimated more frequently than overestimated by the nurses. The absolute concordance was fair to good (35%-69%). Agreement beyond chance was low to fair (0.146-0.539) and the intraclass correlation for well-being was low (0.25-0.28). Absolute concordance and agreement beyond chance did not improve over time., Conclusion: Concordance between patients' and nurses' assessment of symptom prevalence is good, and both patients and nurses reveal identical symptoms as most and least prevalent and intense. However, nurses tend to underestimate symptom intensity. Concordance between patients and nurses symptom intensity scores is poor and does not improve over time., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

The suffering of patients with incurable cancer is determined to a large degree by the presence and intensity of the symptoms of their disease. Knowledge of symptom prevalence is important for clinical practice. The main aim of this study was to obtain a reliable estimation of symptom prevalence in patients with incurable cancer by performing a systematic review of studies assessing this topic. We included 44 studies (including 25,074 patients) on overall symptom prevalence (Group 1) and six studies (including 2,219 patients) on symptom prevalence during the last one to two weeks of life (Group 2). In these studies, symptom prevalence was assessed by a questionnaire, a standardized interview, or the medical record. We identified 37 symptoms assessed in at least five studies. Almost all symptoms occurred in more than 10% of the patients. Five symptoms (fatigue, pain, lack of energy, weakness, and appetite loss) occurred in more than 50% of the patients of Group 1. Weight loss occurred significantly more often in Group 2 compared to Group 1, and pain, nausea, and urinary symptoms occurred significantly less often. Generally, symptom prevalence was highest if assessed by a questionnaire. The results of this study should be used to guide doctors and nurses in symptom management. Proper attention to symptom burden and suffering should be the basis for individually tailored treatment aimed at improving or maintaining quality of life of patients in their last period of life.