Involvement of informal caregivers in supporting patients with COPD: a review of intervention studies

Abstract

Caregivers of individuals with COPD have a key role in maintaining patient adherence and optimizing patient function. However, no systematic review has examined how the caregiver role has been operationalized in interventions to improve outcomes of individuals with COPD or the quality or effectiveness of these interventions. The aims of this review were to 1) determine whether caregivers have been involved as part of interventions to improve outcomes of individuals with COPD; 2) determine the risk of bias within included intervention studies; and 3) examine the effectiveness of interventions that have involved caregivers in improving outcomes of individuals with COPD. The electronic databases of Medline, Embase, PsycINFO, and Cochrane Library were searched from January 2000 to November 2015. Experimental studies testing interventions that involved a caregiver to improve COPD patient outcomes were eligible. Nine studies involving caregivers met inclusion criteria. No studies reported any intervention components targeted solely at caregivers, with most instead including caregivers in dyadic or group education sessions about COPD delivered by health care professionals. The risk of bias identified in included studies was mixed. Seven of the nine studies were effective in improving a broad range of outcomes. These findings highlight that there is an urgent need for methodologically rigorous interventions to examine the effectiveness of strategies to assist caregivers to provide direct care, encourage adherence to health care provider recommendations, act as a health care advocate, and provide emotional and psychosocial support to individuals with COPD.

Involving caregivers in self‐management interventions for patients with heart failure and chronic obstructive pulmonary disease. A systematic review and meta‐analysis

“…Our indicative finding of no gain in patient HRQoL from caregiver involvement in intervention delivery is in contrast to the conclusions from systematic reviews which suggest caregivers should be involved intervention processes (Bryant et al, ; Dionne‐Odom et al, ; McIlfatrick et al, ; Noonan et al, ). Zariksson and colleagues conducted interviews with caregivers of COPD patients 2 years after they participated in a one‐off education session of a COPD self‐management programme.…”

“…Engagement with both pulmonary and cardiac rehabilitation has demonstrated positive improvements in patient HRQoL (Casaburi, ; Sagar et al, ). Existing evidence is conflicting regarding the success of the intervention and lacks clarity about the extent of the involvement of caregivers and the methodological rigour (Bryant et al, ; Buck et al, ; Evangelista, Strӧmberg, & Dionne‐Odom, ). A review of self‐management approaches for people with chronic conditions indicates that there is a gap in the literature with regard to caregivers and self‐management interventions (Barlow, Wright, Sheasby, Turner, & Hainsworth, ).…”

The relation between self‐efficacy in patients with chronic obstructive pulmonary disease and caregiver burden

“…Patients with COPD may need caregiver support due to many factors. These factors are dyspnoea, the cardinal symptom of COPD (6)(7)(8) decreased physical activity (9), support needs during adaptation to treatment (10) and supporting homecare due to increased social burden of the disease (11). In a study by Landis et al, more than 40% of the patients having COPD had moderate or severe dyspnoea and the prevalence of this dyspnoea varied between 27% and 61.8% (8).…”

“…In addition to dyspnoea and decreased physical activity, support needs for adaptation to treatment plays a role in caregiver needs of patients with COPD. As in other chronic diseases, family caregivers play an important part in management of COPD as a potential change agent who can facilitate and enhance adaptation to treatment (10). Increased burden of COPD on the society and transmission from hospital care to homecare are also important factors for caregiver needs.…”

Triangulated perspectives on outcomes of pulmonary rehabilitation in patients with COPD: a qualitative study to inform a core outcome set

“…Furthermore, the inclusion of informal carers' perspectives is scarce, and yet fundamental, as they have an important role on optimizing patients' outcomes. 13 Thus, this study aimed to explore the perspectives of patients, informal carers and health professionals, on outcomes of pulmonary rehabilitation. This will inform a future core outcome set for pulmonary rehabilitation in patients with stable COPD.…”