Identifying experiences of supportive care of children and young people affected by kidney failure: A qualitative systematic review

IF 1.5 4区医学 Q3 NURSING Journal of renal care Pub Date : 2023-12-20 DOI:10.1111/jorc.12484

C. Paterson PhD, M. Turner MBA, M.-E. Hooper PhD, E. Ladbrook MSc, L. Macauley MSc, A. McKie MNursing

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Abstract

Background

Children and young people affected by kidney failure experience complexities in their care. Little is known about the unique needs of this young patient population group living with a long-term condition.

Objective

A meta-aggregation of all qualitative studies was conducted to identify experiences of supportive care among children and young people living with kidney failure.

Methods

A systematic review of qualitative studies was conducted following the Joanna Briggs Institute meta-aggregation method. This review has been reported according to the PRISMA statement guidelines. Six electronic databases (CINAHL, Cochrane Library, MEDLINE, Proquest, PsycINFO, and Scopus) were comprehensively searched by an expert systematic review librarian using keywords and subject headings, from inception to September 2022. All studies were accessed using a predetermined inclusion and exclusion criteria. Methodological quality assessment and data extraction performed. Qualitative findings accompanied by illustrative quotes from included studies were extracted and grouped into categories which created the overall synthesised findings.

Results

A total of 34 studies were included in this review representing a total of 613 children and young people affected by kidney failure. There was a total of 190 findings which created 13 categories representing experiences of supportive care. The meta-aggregation developed five synthesised findings namely: ‘physical needs’, ‘information and technology’, ‘treatment and healthcare’, ‘social needs’ and ‘psychological impacts’.

Conclusion

This systematic review identified that children and young people affected by kidney failure can experience a range of unmet supportive care needs in routine clinical services. Kidney failure impacted children and young people's self-identify, social and peer networks, introduced daily practical needs because of inherent physical and psychological burden due to the failure and associated treatments. Despite improvements in the medical management of kidney failure in children and young people, further attention is needed to optimise supported self-management in this young patient group.

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确定受肾衰竭影响的儿童和青少年的支持性护理经验：定性系统回顾。

背景：受肾衰竭影响的儿童和青少年在护理过程中面临着复杂的问题。人们对这一长期患病的年轻患者群体的独特需求知之甚少：目的：对所有定性研究进行元汇总，以确定肾衰竭儿童和青少年的支持性护理经验：按照乔安娜-布里格斯研究所（Joanna Briggs Institute）的元汇总方法，对定性研究进行了系统性回顾。本综述根据 PRISMA 声明指南进行报告。一位系统综述图书管理员专家使用关键词和主题词对六个电子数据库（CINAHL、Cochrane Library、MEDLINE、Proquest、PsycINFO 和 Scopus）进行了全面检索，检索时间从开始到 2022 年 9 月。所有研究均按照预先确定的纳入和排除标准进行检索。进行方法质量评估和数据提取。从纳入的研究中提取定性结果并附带说明性引文，然后将其归类，形成总体综合结果：本综述共纳入 34 项研究，涉及 613 名受肾衰竭影响的儿童和青少年。共有 190 项研究结果，其中 13 个类别代表了支持性护理的经验。元汇总得出了五项综合研究结果，即结论：本系统综述发现，受肾衰竭影响的儿童和青少年在常规临床服务中可能会遇到一系列未得到满足的支持性护理需求。肾衰竭影响了儿童和青少年的自我认同、社交和同伴网络，并由于肾衰竭和相关治疗所造成的固有生理和心理负担而影响了他们的日常实际需求。尽管儿童和青少年肾衰竭的医疗管理有所改善，但仍需进一步关注如何优化这一年轻患者群体的支持性自我管理。

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来源期刊

Journal of renal care Nursing-Advanced and Specialized Nursing

CiteScore

3.50

自引率

5.30%

发文量

期刊介绍： The Journal of Renal Care (JORC), formally EDTNA/ERCA Journal, is the official publication of the European Dialysis and Transplant Nursing Association/European Renal Care Association (EDTNA/ERCA). The Journal of Renal Care is an international peer-reviewed journal for the multi-professional health care team caring for people with kidney disease and those who research this specialised area of health care. Kidney disease is a chronic illness with four basic treatments: haemodialysis, peritoneal dialysis conservative management and transplantation, which includes emptive transplantation, living donor & cadavaric transplantation. The continuous world-wide increase of people with chronic kidney disease (CKD) means that research and shared knowledge into the causes and treatment is vital to delay the progression of CKD and to improve treatments and the care given. The Journal of Renal Care is an important journal for all health-care professionals working in this and associated conditions, such as diabetes and cardio-vascular disease amongst others. It covers the trajectory of the disease from the first diagnosis to palliative care and includes acute renal injury. The Journal of Renal Care accepts that kidney disease affects not only the patients but also their families and significant others and provides a forum for both the psycho-social and physiological aspects of the disease.