Family members’ experiences and expectations of self-management counseling while caring for a person with chronic obstructive pulmonary disease: a systematic review of qualitative evidence

Abstract

Objective: 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. Introduction: 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. Inclusion criteria: 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. Methods: 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 The search strategy aimed to find published and unpublished studies in English and Finnish.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. Results: 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. Conclusions: 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.

The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews

“…Most patients with HF had trouble explaining breathlessness [ 53 ]. In COPD and HF, most informal caregivers felt like outsiders or abandoned in care processes [ 36 , 143 , 151 ].…”

“…In HF and COPD, informal caregivers experienced ambiguity and uncertainty in their role [ 36 , 59 , 117 , 143 , 151 ]. Most had no formal care training and devised personal strategies [ 36 , 144 ].…”

“…Increased knowledge provided a greater sense of control [ 41 ], increased confidence in SM intervention, improved communication with healthcare professionals, reduced fears of deterioration, prevented hospitalisation, improved anxiety and depression, and increased ability to deal with negative emotions [ 132 , 155 ]. However, some informal caregivers believed that COPD SM counselling provided insufficient practical advice [ 151 ].…”

Health-Related Quality of Life in Primary Caregivers of People Receiving Palliative Home Care

“…20 Likewise, health care from health professionals is necessary to prevent symptoms associated with caregiving tasks and daily life activities, especially psychological and physical symptoms. 21 In this study, the physical dimension of the HRQOL had the lowest score (mean, 12.9; in a score range between 5 and 20). This result coincides with that obtained in a study conducted in Colombians with cancer (mean, 26.5; score range between 9 and 48), 12 as the participants reported that assuming the care of a relative who needs palliative home care had caused them pain, tiredness, exhaustion, and changes in eating and sleeping habits.…”

“…In addition, the lack of social support denotes the need not only for tangible family support but also for economic support, as evidenced in a study conducted in Japan 20 . Likewise, health care from health professionals is necessary to prevent symptoms associated with caregiving tasks and daily life activities, especially psychological and physical symptoms 21 …”