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一项以家庭为中心的干预措施,旨在帮助多发性骨髓瘤患者过渡到慢性病生活状态:一项试点研究。

A family-centered intervention for the transition to living with multiple myeloma as a chronic illness: A pilot study.

作者信息

Mazanec Susan R, Miano Sarah, Baer Linda, Campagnaro Erica L, Sattar Abdus, Daly Barbara J

机构信息

Frances Payne Bolton School of Nursing, Case Western Reserve University, 2120 Cornell Rd., Cleveland, OH 44106-4904, United States; University Hospitals Seidman Cancer Center, 11100 Euclid Ave., Cleveland, OH 44106, United States.

Frances Payne Bolton School of Nursing, Case Western Reserve University, 2120 Cornell Rd., Cleveland, OH 44106-4904, United States.

出版信息

Appl Nurs Res. 2017 Jun;35:86-89. doi: 10.1016/j.apnr.2017.03.003. Epub 2017 Mar 19.

Abstract

Patients with multiple myeloma and their family caregivers must master self-management tasks related not only to the disease and treatment, but also associated with transitioning to living with chronic illness. The aim of this study was to assess the feasibility, acceptability, safety, and fidelity of an intervention that had a psychoeducational approach and included a low-impact, home-based walking activity. A secondary aim was to obtain preliminary data of the effect of the intervention, as compared to an attention control group, on anxiety, activation for self-management, fatigue, depression and health-related quality of life (HRQOL). A sample of 15 adult patients with multiple myeloma and their family caregivers were randomized into either an intervention or attention-control group. The intervention was delivered to the dyad in one session and booster calls were made at 1 and 3 weeks. The control group received printed educational resources and telephone contacts. Measures were done at baseline, and 6 and 12 weeks. Descriptive statistics were used. The intervention was safe, feasible, and acceptable to patients and caregivers. Fidelity was high for the initial session, but low with booster calls. Improvement in scores for activation, fatigue, depression, anxiety, physical HRQOL, and emotional distress was seen in at least 40% of patients in the intervention group. Fewer caregivers in the intervention group showed improvement on the outcome variables. Leveraging a behavioral strategy such as walking, along with supportive and educational resources, is promising for promoting well-being within the patient/caregiver dyad. Further refinement of the intervention is needed to strengthen its efficacy for the caregiver and exploratory work is essential to understand the interpersonal supportive processes associated with the walking activity.

摘要

多发性骨髓瘤患者及其家庭护理人员不仅必须掌握与疾病和治疗相关的自我管理任务,还必须掌握与过渡到慢性病生活相关的任务。本研究的目的是评估一种采用心理教育方法且包括低强度居家步行活动的干预措施的可行性、可接受性、安全性和保真度。次要目的是获取与注意力控制组相比,该干预措施对焦虑、自我管理积极性、疲劳、抑郁和健康相关生活质量(HRQOL)影响的初步数据。15名成年多发性骨髓瘤患者及其家庭护理人员被随机分为干预组或注意力控制组。干预措施在一次会议中提供给这对组合,并在第1周和第3周进行跟进电话。对照组接受印刷的教育资源和电话联系。在基线、第6周和第12周进行测量。采用描述性统计。该干预措施对患者和护理人员是安全、可行且可接受的。初始会议的保真度很高,但跟进电话的保真度较低。干预组中至少40%的患者在积极性、疲劳、抑郁、焦虑、身体HRQOL和情绪困扰方面的得分有所改善。干预组中显示结果变量有所改善的护理人员较少。利用步行等行为策略以及支持性和教育资源,有望促进患者/护理人员组合的幸福感。需要进一步完善干预措施以增强其对护理人员的疗效,探索性工作对于理解与步行活动相关的人际支持过程至关重要。

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