“我对自己的行为有了更多的认识”-一项针对肌痛性脑脊髓炎/慢性疲劳综合征患者的健康心理团体干预的定性纵向研究。

'I became more aware of my actions'-A qualitative longitudinal study of a health psychological group intervention for patients with myalgic encephalomyelitis/chronic fatigue syndrome.

机构信息

Department of Psychology, University of Jyväskylä, Jyväskylä, Finland.

Wellbeing Services County of Päijät-Häme, General Hospital Psychiatry Outpatient Clinic, Lahti, Finland.

出版信息

Health Expect. 2023 Dec;26(6):2312-2324. doi: 10.1111/hex.13833. Epub 2023 Aug 1.

DOI:10.1111/hex.13833

PMID:37528544

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10632634/

Abstract

OBJECTIVES

To explore myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients' experiences of a health psychological group intervention and its usefulness, non-usefulness or harmfulness for illness management and adjustment.

DESIGN

A qualitative longitudinal study using inductive content analysis.

METHODS

Semistructured interviews were conducted with 10 adults. Interviews were conducted before the 16-week intervention, immediately after its completion, and at 3 months after completion.

RESULTS

Participants reported that the intervention was useful and not harmful. The model improved their ability to cope with ME/CFS by providing them with useful information about the illness along with peer support and professional guidance. Participants reported improved illness management and adjustment, which they perceived as an outcome of achieving new ways of thinking, feeling and acting.

CONCLUSIONS

Participants viewed the health psychological approach to group intervention as meeting their needs. To achieve better illness management and adjustment, more consideration should be given to supportive interactional processes with peers and healthcare professionals.

PATIENT OR PUBLIC CONTRIBUTION

The intervention was developed to meet patients' needs of finding ways to manage their illness. The research team consulted eight patients with ME/CFS and three clinical centres working with ME/CFS treatment and rehabilitation at the intervention planning stage. Their comments influenced the planning and content of the intervention as well as ethical issues that should be considered, such as potential harm to participants. All participants were informed about the theoretical foundations of the study and the principles guiding the intervention. Participants were not involved in the data analysis.

CLINICAL TRIAL REGISTRATION

NCT04151693.

摘要

目的

探讨肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）患者对健康心理团体干预的体验及其对疾病管理和调整的有用性、无用性或有害性。

设计

采用归纳内容分析法的定性纵向研究。

方法

对 10 名成年人进行半结构式访谈。访谈在 16 周干预前、干预完成后即刻和完成后 3 个月进行。

结果

参与者报告称，该干预措施是有用的，且没有危害。该模式通过提供有关疾病的有用信息以及同伴支持和专业指导，提高了他们应对 ME/CFS 的能力。参与者报告说，他们的疾病管理和调整得到了改善，他们认为这是他们采用新的思维、感受和行动方式的结果。

结论

参与者认为健康心理方法的团体干预满足了他们的需求。为了实现更好的疾病管理和调整，应更多地考虑与同伴和医疗保健专业人员的支持性互动过程。

患者或公众的贡献

该干预措施是为满足患者寻找管理疾病方法的需求而开发的。研究团队在干预规划阶段咨询了 8 名 ME/CFS 患者和 3 家临床中心，这些中心从事 ME/CFS 的治疗和康复工作。他们的意见影响了干预措施的规划和内容，以及应该考虑的伦理问题，例如对参与者的潜在伤害。所有参与者都了解了研究的理论基础和指导干预的原则。参与者没有参与数据分析。