School of Psychology, Faculty of Health, Deakin University, Burwood, Victoria, Australia.
Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia.
J Clin Nurs. 2023 Oct;32(19-20):7101-7124. doi: 10.1111/jocn.16806. Epub 2023 Jun 23.
Unmet supportive care needs (SCN) refer to perceived gaps in the support parents want to manage caregiving activities for children with chronic health conditions (CHC) and the support received. This review aims to systematically identify the unmet SCN of families with children living with five common paediatric CHC and characterise the assessment tools used to measure SCN.
Systematic review methodology with narrative synthesis of data. Reporting followed the PRISMA statement guidelines.
Literature searches were conducted in electronic databases Medline complete, PsycINFO, CINHAL and EMBASE to retrieve relevant articles published between 1990 and July 2022. Eligible studies involved (i) children aged 0-18 years diagnosed with either of cancer, congenital heart disease (CHD), diabetes, asthma, renal disease and (ii) assessment of unmet SCN. Studies involving children with genetic or developmental conditions were excluded. The methodological quality of studies was assessed using JBI assessment tool.
Of 6223 articles screened, 34 papers were included (25 quantitative, 5 qualitative and 4 mixed design). Most papers explored unmet needs of families with cancer (n = 26). The remaining articles concerned CHD (n = 5), asthma (n = 2) and mixed CHC (n = 1, renal failure, and diabetes). Information (e.g. treatment, lifestyle, etc.) and health care (e.g. emotional support, practical services, etc.) were the most common unmet need domains across health conditions. A variety of methods and need assessments hampered comparisons between studies both across and within CHC.
Irrespective of illness, addressing unmet informational or health care needs may help to optimise outcomes and care for children and families living with common CHC. There was considerable variation in reporting styles, study design and need assessments both within and across conditions.
Health care professionals must routinely evaluate the type, quality and quantity of psychoeducation and support that families of children with CHC want and receive. Providing nurses with more effective strategies to assess child and family needs across a broad range of domains may help to increase understanding of where further support for families is required.
There was no patient or public contribution to this study as it involved a systematic review of existing literature.
未满足的支持性护理需求是指父母在管理患有慢性健康状况（CHC）的儿童的护理活动时所期望的支持与实际获得的支持之间存在差距。本综述旨在系统地确定患有五种常见儿科 CHC 的儿童家庭的未满足支持性护理需求，并描述用于测量这些需求的评估工具。
采用系统综述方法，并对数据进行叙述性综合。报告遵循 PRISMA 声明指南。
在 Medline complete、PsycINFO、CINHAL 和 EMBASE 电子数据库中进行文献检索，以检索 1990 年至 2022 年 7 月期间发表的相关文章。符合条件的研究包括：（i）年龄在 0-18 岁之间被诊断患有癌症、先天性心脏病（CHD）、糖尿病、哮喘、肾脏疾病的儿童；（ii）评估未满足的支持性护理需求。排除涉及遗传性或发育性疾病的儿童的研究。使用 JBI 评估工具评估研究的方法学质量。
在筛选的 6223 篇文章中，有 34 篇文章被纳入（25 篇定量研究、5 篇定性研究和 4 篇混合设计研究）。大多数文章都探讨了癌症患儿家庭的未满足需求（n=26）。其余文章涉及 CHD（n=5）、哮喘（n=2）和混合 CHC（n=1，肾衰竭和糖尿病）。信息（如治疗、生活方式等）和医疗保健（如情感支持、实际服务等）是各种健康状况下最常见的未满足需求领域。不同的方法和需求评估方法妨碍了跨疾病以及疾病内的研究之间的比较。
无论疾病如何，解决信息或医疗保健方面的未满足需求都可能有助于优化患有常见 CHC 的儿童及其家庭的结局和护理。在报告风格、研究设计和需求评估方面，无论是在疾病内还是跨疾病，都存在相当大的差异。
医疗保健专业人员必须定期评估儿童慢性健康状况患儿家庭希望获得和实际获得的心理教育和支持的类型、质量和数量。为护士提供更有效的策略，以评估广泛领域的儿童和家庭需求，可能有助于增加对家庭需要进一步支持的领域的理解。
由于本研究是对现有文献的系统综述，因此没有患者或公众参与。
