Megan R Schaefer, Andrea Wojtowicz, Molly Gardner, Priyal Patel, Malcolm Sutherland-Foggio, Ansley E Kenney, Alexandra C Himelhoch, Lisa Humphrey, Randal Olshefski, Micah A Skeens, Cynthia Gerhardt
{"title":"\"If We Don't Beat It, How Long Will It Take?\" Worries and Concerns of Children with Advanced Cancer and Their Parents.","authors":"Megan R Schaefer, Andrea Wojtowicz, Molly Gardner, Priyal Patel, Malcolm Sutherland-Foggio, Ansley E Kenney, Alexandra C Himelhoch, Lisa Humphrey, Randal Olshefski, Micah A Skeens, Cynthia Gerhardt","doi":"10.1089/jpm.2024.0307","DOIUrl":null,"url":null,"abstract":"<p><p><b><i>Background:</i></b> Navigating pediatric advanced cancer is challenging for children and parents, resulting in increased risk for psychological distress. While research has explored parent worries/concerns, few studies have included children's perspectives. <b><i>Objectives:</i></b> To explore worries/concerns in children with advanced cancer and their parents. <b><i>Design:</i></b> This was a part of a larger, mixed-methods study examining shared decision-making. <b><i>Setting/Subjects:</i></b> Children (of age 5-25) with advanced cancer (i.e., relapsed/refractory disease or physician estimated prognosis of <60%) and their parents in the Midwestern United States. <b><i>Measurements:</i></b> Children and parents completed the Response to Stress Questionnaire and individual semi-structured interviews. Coders analyzed the qualitative data via thematic analysis. <b><i>Results:</i></b> Parent and child worries/concerns included: (1) prognosis, (2) symptom burden and side effects of treatment, (3) emotional well-being, (4) impact on future, and (5) no concerns/uncertainty (child-only theme). Benefit-finding emerged as a minor theme. Many expressed concerns about treatment response, resulting in worries about death/dying. Others shared fear about managing current symptoms and the impact of long-term treatment side effects on the child's future. Parents reported worry about their child's emotional well-being, while children expressed worries about their families if they died. While all parents were able to identify worries/concerns, some children denied worries/concerns. Quantitatively, parents similarly identified worries about prognosis and symptom burden but also endorsed concern about being unable to help their child feel better. <b><i>Conclusions:</i></b> Our findings highlight similarities and differences in worries/concerns among children and parents as they navigate a child's advanced cancer journey. Early integration of palliative care may be helpful in mitigating these issues.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":""},"PeriodicalIF":2.2000,"publicationDate":"2024-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of palliative medicine","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1089/jpm.2024.0307","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 0
Abstract
Background: Navigating pediatric advanced cancer is challenging for children and parents, resulting in increased risk for psychological distress. While research has explored parent worries/concerns, few studies have included children's perspectives. Objectives: To explore worries/concerns in children with advanced cancer and their parents. Design: This was a part of a larger, mixed-methods study examining shared decision-making. Setting/Subjects: Children (of age 5-25) with advanced cancer (i.e., relapsed/refractory disease or physician estimated prognosis of <60%) and their parents in the Midwestern United States. Measurements: Children and parents completed the Response to Stress Questionnaire and individual semi-structured interviews. Coders analyzed the qualitative data via thematic analysis. Results: Parent and child worries/concerns included: (1) prognosis, (2) symptom burden and side effects of treatment, (3) emotional well-being, (4) impact on future, and (5) no concerns/uncertainty (child-only theme). Benefit-finding emerged as a minor theme. Many expressed concerns about treatment response, resulting in worries about death/dying. Others shared fear about managing current symptoms and the impact of long-term treatment side effects on the child's future. Parents reported worry about their child's emotional well-being, while children expressed worries about their families if they died. While all parents were able to identify worries/concerns, some children denied worries/concerns. Quantitatively, parents similarly identified worries about prognosis and symptom burden but also endorsed concern about being unable to help their child feel better. Conclusions: Our findings highlight similarities and differences in worries/concerns among children and parents as they navigate a child's advanced cancer journey. Early integration of palliative care may be helpful in mitigating these issues.
期刊介绍:
Journal of Palliative Medicine is the premier peer-reviewed journal covering medical, psychosocial, policy, and legal issues in end-of-life care and relief of suffering for patients with intractable pain. The Journal presents essential information for professionals in hospice/palliative medicine, focusing on improving quality of life for patients and their families, and the latest developments in drug and non-drug treatments.
The companion biweekly eNewsletter, Briefings in Palliative Medicine, delivers the latest breaking news and information to keep clinicians and health care providers continuously updated.