Siltanen Hannele, Jylhä Virpi, Holopainen Arja, Paavilainen Eija
Department of Health Sciences, Faculty of Social Sciences, Tampere University, Tampere, Finland.
Nursing Research Foundation, Helsinki, Finland.
JBI Database System Rev Implement Rep. 2019 Nov;17(11):2214-2247. doi: 10.11124/JBISRIR-D-19-00056.
The objective of this review was to identify and synthesize existing evidence on the experiences and expectations of self-management counseling of adult family members who are informal caregivers of a person with chronic obstructive pulmonary disease (COPD) in the context of inpatient or outpatient care.
Chronic obstructive pulmonary disease is the fourth leading cause of mortality and morbidity worldwide. It is a progressive, lifelong and unpredictable disease. As the disease progresses, both the people with COPD and their family members require information and practical skills to manage the disease. The role of family members is particularly important at the advanced stage of COPD. This systematic review examined family members' experiences and expectations of self-management counseling.
This review considered qualitative studies that investigated adult (older than18 years) family members' experiences or expectations of COPD self-management counseling in the context of inpatient or outpatient care. "Family member" refers to a person who is an informal caregiver because of his or her relationship to the person with COPD.
A three-step search strategy was utilized in this review. The search strategy aimed to find published and unpublished studies in English and Finnish. The databases MEDLINE, CINAHL, PsycINFO, Scopus and the Finnish medical bibliographic database, Medic, were searched. The search was conducted in December 2015 and updated in September 2018. Titles and abstracts were screened by two independent reviewers for the review's inclusion criteria. Eligible studies were then critically appraised by two independent reviewers for methodological quality. The findings and illustrations of the findings were extracted and assigned a level of credibility. The qualitative research findings were pooled using the JBI method of meta-aggregation.
Ten papers were selected for inclusion in this review. These studies were published from 2002 to 2017. The quality of all included studies was at least moderate. Each study had a total score between 7 and 10 on the JBI Critical Appraisal Checklist for Qualitative Research. The following four synthesized findings were aggregated from nine categories and 39 study findings: i) Family members' experiences with unresponsive behavior from health professionals, ii) Family members' experiences of unmet needs in self-management counseling, iii) Family members' information needs concerning COPD management, and iv) Family members' information needs concerning coping strategies.
The synthesized findings indicate that family members are frustrated by the shortcomings of self-management counseling. They also feel unprepared for and uncertain about their caring role. They need more information about COPD and coping strategies for COPD. Counseling is essential to high-quality care and should be offered to family members caring for a loved one at any stage of COPD.
本综述的目的是识别和综合现有证据，以了解慢性阻塞性肺疾病（COPD）患者的成年家庭成员作为非正式照护者，在住院或门诊护理背景下进行自我管理咨询的经历和期望。
慢性阻塞性肺疾病是全球第四大致死和致残原因。它是一种进行性、终身且不可预测的疾病。随着疾病进展，COPD患者及其家庭成员都需要信息和实用技能来管理该疾病。家庭成员的作用在COPD晚期尤为重要。本系统综述考察了家庭成员在自我管理咨询方面的经历和期望。
本综述纳入了定性研究，这些研究调查了成年（18岁以上）家庭成员在住院或门诊护理背景下对COPD自我管理咨询的经历或期望。“家庭成员”指因与COPD患者的关系而成为非正式照护者的人。
本综述采用了三步搜索策略。该搜索策略旨在查找英文和芬兰文的已发表和未发表研究。检索了MEDLINE、CINAHL、PsycINFO、Scopus数据库以及芬兰医学书目数据库Medic。搜索于2015年12月进行，并于2018年9月更新。由两名独立评审员根据综述的纳入标准筛选标题和摘要。然后，两名独立评审员对符合条件的研究进行方法学质量的严格评估。提取研究结果及结果说明并赋予可信度等级。使用JBI元聚合方法汇总定性研究结果。
十篇论文被选入本综述。这些研究发表于2002年至2017年之间。所有纳入研究的质量至少为中等。每项研究在JBI定性研究批判性评估清单上的总分在7至10分之间。从九个类别和39项研究结果中汇总出以下四个综合结果：i）家庭成员对医护人员无反应行为的经历，ii）家庭成员在自我管理咨询中未满足需求的经历，iii）家庭成员关于COPD管理的信息需求，以及iv）家庭成员关于应对策略的信息需求。
综合结果表明，家庭成员对自我管理咨询的不足感到沮丧。他们也对自己的照护角色感到准备不足和不确定。他们需要更多关于COPD和COPD应对策略的信息。咨询对于高质量护理至关重要，应在COPD的任何阶段提供给照顾亲人的家庭成员。
