Burden, social support, and coping strategies in family caregivers of individuals receiving home mechanical ventilation: a cross-sectional study

Abstract

Background: Home mechanical ventilation (HMV) is a treatment method for patients with chronic respiratory failure. HMV is a challenge for both patients and their caregivers. Some studies have shown a higher risk of depression, job loss, or lifestyle disturbance in family members caring for HMV patients. The purpose of the study was to measure caregiver burden, perceived social support, and coping strategies.

Methods: In the cross-sectional study, 58 caregivers (65.52% female) of HMV patients treated at five healthcare institutions were surveyed. The questionnaires including patient/caregiver demographic data, the type and duration of MV, the Caregiver Burden Scale (CBS), the Social Support Scale (SSS), and the Brief-COPE questionnaire were applied. For statistical analysis, the Mann‒Whitney U test, the Kruskal‒Wallis H test, Dunn's test, and Spearman correlations were used.

Results: In the CBS, a high level of burden was observed mainly in the isolation and disappointment subscales. The female caregivers achieved a higher score for general strain than did the male caregivers (p = 0.023). Differences in the distribution of the isolation (p = 0.028) and disappointment (p = 0.03) variables between the financial situation groups were observed. The older the patient, the lower the burden in the domains of isolation (p = 0.015) and disappointment (p = 0.005) was elicited. Invasive MV was associated with greater burdens of general strain (p = 0.005), isolation (p = 0.001), and disappointment (p = 0.001). A medium total SSS score was shown (74.5 ± 7.56). Caregivers used various coping strategies. The most common were planning, acceptance, and active coping. Self-blame and denial were positively related to several CBS subscales, whereas acceptance of difficult situations and positive reframing were related to lower scores.

Conclusions: Caregivers most frequently experienced a medium level of burden. Female caregivers were characterized by higher level of burden. Invasive ventilation increased the burden. Respondents who assessed their financial situations as good, had lower burden in the selected subscales. Using some positive coping strategies may reduce the level of burden. Interventions to ensure that caregivers overcome these burdens should be undertaken.

Keywords: Burden; Coping; Home mechanical ventilation; Social support.