An Integrative Review of Factors Associated With Symptom Burden at the End of Life in Children With Cancer

Abstract

Children with cancer experience multiple symptoms at end of life (EOL) that impair their health-related quality of life. Using the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines, this integrative literature review comprehensively summarized symptom experiences of children with cancer at EOL. The Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, and Academic Premier were searched between January 2007 to September 2019 for articles published in English using the MeSH terms: symptom burden or distress AND children with cancer or pediatric cancer or cancer children or oncology and pediatrics AND EOL care or palliative care or death or dying or terminally ill. The inclusion criteria were the following: (a) study designs [randomized controlled trials, nonexperimental, secondary analysis (if aims were distinct from primary studies) and qualitative]; (b) participants <18 years old (died of cancer, had no realistic chance of cure, or had advanced cancer); and (c) focused on symptom experiences/burden at EOL. Exclusion criteria were nonresearch articles, systematic reviews, case studies, reports, and studies that focused on cancer survivors and/or those receiving curative therapies. Twenty-seven articles met inclusion criteria. The most prevalent symptoms—pain, fatigue, dyspnea, and loss of appetitewere associated with impairments in health-related quality of life. Children with brain tumors experienced higher symptom burden compared to those with hematologic/solid malignancies. Children who received cancer-directed therapies experienced disproportionate symptoms and were more likely to die in the intensive care unit compared with those who did not receive cancer-directed therapies. Most common location of death was home. This integrative review indicated that children with cancer were polysymptomatic at EOL. Strategies facilitating effective symptom management at EOL are needed.

Location of end‐of‐life care of children with cancer: A systematic review of parent experiences

“…Dying children endure a high burden of physical and psychological symptoms. Prevalent symptoms include pain, fatigue, poor appetite, dyspnea, irritability, sleep disturbances, anxiety, sadness, fear of being alone, and fear of dying 9 . When symptoms are not optimally managed, suffering for the child and family is exacerbated 10 .…”

The Most Important Aspects for a Good Death: Perspectives from Parents of Children with Cancer

“… 39 A more recent review found that children with cancer had several concurrent symptoms during the end-of-life period. 40 Therefore, health care providers should ensure that the best prognostic information is provided to children with cancer and their parents to suggest less painful approaches for improving the quality of end-of-life, such as PPC. Despite parents’ knowledge regarding the discouraging prognosis, they might not feel deprived of hope if their children receive appropriate PPC.…”

Desires vs. conditions: A qualitative study exploring the factors affecting the place of death of child with cancer in Turkey

“…Children with advanced cancer experience high symptom distress (Eche et al, 2020;Torres et al, 2019). Mothers felt stressed and helpless when they could not help their children.…”