Schaefer Megan R, Wojtowicz Andrea, Gardner Molly, Patel Priyal, Sutherland-Foggio Malcolm, Kenney Ansley E, Himelhoch Alexandra C, Humphrey Lisa, Olshefski Randal, Skeens Micah A, Gerhardt Cynthia
Nationwide Children's Hospital, Columbus, Ohio, USA.
Department of Pediatrics, The Ohio State University College of Medicine, Columbus, Ohio, USA.
J Palliat Med. 2025 Feb;28(2):207-216. doi: 10.1089/jpm.2024.0307. Epub 2024 Nov 28.
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. To explore worries/concerns in children with advanced cancer and their parents. This was a part of a larger, mixed-methods study examining shared decision-making. 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. Children and parents completed the Response to Stress Questionnaire and individual semi-structured interviews. Coders analyzed the qualitative data via thematic analysis. 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. 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.
对于儿童及其父母来说，应对小儿晚期癌症颇具挑战，这会增加心理困扰的风险。虽然已有研究探讨了父母的担忧，但很少有研究纳入儿童的观点。为了探究晚期癌症患儿及其父母的担忧。这是一项更大规模的混合方法研究的一部分，该研究考察共同决策。美国中西部地区患有晚期癌症（即复发/难治性疾病或医生估计预后小于60%）的5至25岁儿童及其父母。儿童和父母完成了应激反应问卷以及个人半结构化访谈。编码人员通过主题分析对定性数据进行了分析。父母和儿童的担忧包括：（1）预后，（2）治疗的症状负担和副作用，（3）情绪健康，（4）对未来的影响，以及（5）无担忧/不确定性（仅为儿童主题）。发现益处是一个次要主题。许多人表达了对治疗反应的担忧，进而导致对死亡的担忧。其他人则分享了对控制当前症状以及长期治疗副作用对孩子未来影响的恐惧。父母报告了对孩子情绪健康的担忧，而孩子则表达了如果自己去世对家人的担忧。虽然所有父母都能够识别担忧，但一些孩子否认有担忧。在定量方面，父母同样识别出对预后和症状负担的担忧，但也认可对无法帮助孩子感觉更好的担忧。我们的研究结果突出了儿童和父母在应对孩子晚期癌症过程中担忧的异同。早期整合姑息治疗可能有助于缓解这些问题。
