Thomas Sangeetha, Byrne Linda K, Ryan Nicholas P, Hendrieckx Christel, White Victoria
School of Psychology, Faculty of Health, Deakin University, Melbourne, VIC, 3125, Australia.
Department of Paediatrics, University of Melbourne, Melbourne, VIC, Australia.
World J Pediatr. 2023 Dec;19(12):1181-1191. doi: 10.1007/s12519-023-00730-w. Epub 2023 May 29.
The aim of this study was to identify similarities and differences in the unmet supportive care needs (USCN) of families of children with major chronic health conditions (CHCs) using a universal need assessment tool.
A cross-sectional online survey involving parents of children with congenital heart disease (CHD), type 1 diabetes mellitus (T1D), cancer, and asthma diagnosed within the last 5 years recruited via social media and support organizations. Thirty-four items assessing the USCN across six domains (care needs, physical and social needs, informational needs, support needs, financial needs, child-related emotional needs) were responded to on a 4-point Likert scale [no need (1) to high need (4)]. Descriptive statistics identified the level of need, and linear regressions identified factors associated with higher need domain scores. Due to small numbers, the asthma group was excluded from comparisons across CHCs.
One hundred and ninety-four parents completed the survey (CHD: n = 97, T1D: n = 50, cancer: n = 39, and asthma: n = 8). Parents of children with cancer were most likely to report at least one USCN (92%), followed by parents of children with T1D (62%). The five most commonly reported USCN across CHCs were drawn from four domains: child-related emotional, support, care, and financial. Three need items were included in the top five needs for all conditions. A higher USCN was associated with a greater frequency of hospital visits and the absence of parental support.
Using a universal need assessment tool, this is one of the first studies to characterize USCN in families of children diagnosed with common CHCs. While proportions endorsing different needs varied across conditions, the most endorsed needs were similar across the illness groups. This suggests that support programs or services could be shared across different CHCs. Video Abstract.
本研究旨在使用通用需求评估工具，识别患有重大慢性健康状况（CHC）儿童家庭未满足的支持性护理需求（USCN）中的异同。
通过社交媒体和支持组织招募了一项横断面在线调查，涉及过去5年内被诊断患有先天性心脏病（CHD）、1型糖尿病（T1D）、癌症和哮喘的儿童的父母。通过四点李克特量表[无需求（1）至高需求（4）]对评估六个领域（护理需求、身体和社会需求、信息需求、支持需求、财务需求、与儿童相关的情感需求）的34个项目进行了回应。描述性统计确定了需求水平，线性回归确定了与较高需求领域得分相关的因素。由于数量较少，哮喘组被排除在不同CHC之间的比较之外。
194名家长完成了调查（CHD：n = 97，T1D：n = 50，癌症：n = 39，哮喘：n = 8）。癌症患儿的父母最有可能报告至少一项未满足的支持性护理需求（92%），其次是1型糖尿病患儿的父母（62%）。不同CHC中最常报告的五项未满足的支持性护理需求来自四个领域：与儿童相关的情感、支持、护理和财务。所有疾病的前五项需求中都包括三项需求项目。较高的未满足的支持性护理需求与更频繁的医院就诊和缺乏父母支持有关。
使用通用需求评估工具，这是首批描述被诊断患有常见CHC儿童家庭未满足的支持性护理需求的研究之一。虽然认可不同需求的比例因疾病而异，但各疾病组中最常被认可的需求相似。这表明支持项目或服务可以在不同的CHC之间共享。视频摘要。
