Cafarella Paul, Effing Tanja, Chur-Hansen Anna
School of Psychology, Faculty of Health and Medical Sciences, University of Adelaide, South Australia, Australia.
Department of Respiratory Medicine, Flinders Medical Centre, Southern Adelaide Local Health Network, South Australia, Australia.
Palliat Support Care. 2023 Apr;21(2):320-336. doi: 10.1017/S1478951522000311.
This systematic review considers interventions designed to improve the psychological well-being (PWB) of carers of people with motor neuron disease (MND) using quantitative, qualitative, or mixed-methods studies, and aimed to (1) summarize current research, (2) assess the quality of evidence, and (3) evaluate the effectiveness of interventions.
Mixed-methods systematic review (MMSR) was conducted based on Joanna Briggs Institute methodology for quantitative, qualitative, and mixed-methods reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.
Thirteen papers met the inclusion criteria, including 12 studies (six mixed-methods, four quantitative, and two qualitative). Four studies described randomized controlled trials, seven detailed uncontrolled longitudinal studies with a single treatment group and a pre-post design, and one was an observational survey. Critical appraisal of the studies revealed a wide range of weaknesses in the quantitative and/or qualitative methodologies. Due to the heterogeneity of interventions, outcomes, and measurements, a narrative and convergent approach to data synthesis was employed. While a minority of studies demonstrated some benefits to hedonic and eudaimonic aspects of PWB, the interpretability of these data was limited by methodological problems.
This MMSR highlighted a paucity of quality research regarding interventions for the PWB of MND carers. Although some benefits to PWB were demonstrated, most studies suffered from substantial methodological problems, rendering the overall evidence base low. High-quality and carefully designed studies are a priority to enable effective development and testing of much-needed interventions targeting the PWB for MND carers.
本系统评价纳入了旨在通过定量、定性或混合方法研究来改善运动神经元病（MND）患者照料者心理健康状况（PWB）的干预措施，旨在（1）总结当前研究，（2）评估证据质量，以及（3）评价干预措施的有效性。
基于乔安娜·布里格斯循证卫生保健中心针对定量、定性和混合方法评价的方法以及系统评价与Meta分析的首选报告项目指南，开展了混合方法系统评价（MMSR）。
13篇论文符合纳入标准，包括12项研究（6项混合方法研究、4项定量研究和2项定性研究）。4项研究描述了随机对照试验，7项详细介绍了单治疗组前后对照的非对照纵向研究，1项为观察性调查。对这些研究的严格评价揭示了定量和/或定性方法存在广泛的缺陷。由于干预措施、结果和测量方法的异质性，采用了叙述性和整合性的数据合成方法。虽然少数研究表明对PWB的享乐和幸福方面有一些益处，但这些数据的可解释性受到方法学问题的限制。
本MMSR强调了关于MND患者照料者PWB干预措施的高质量研究匮乏。尽管已证明对PWB有一些益处，但大多数研究存在重大方法学问题，导致总体证据基础薄弱。高质量和精心设计的研究是当务之急，以便能够有效开发和测试针对MND患者照料者PWB的急需干预措施。
