Burden and Coping Strategies in Families of Patients under Noninvasive Home Mechanical Ventilation

Abstract

Background: It is well documented that caregivers of patients with chronic respiratory failure under noninvasive mechanical ventilation (NIMV) are at high risk to develop depression, burden, overload and declining health over time. Objectives: The purpose of the study was to investigate the subjective and objective burden imposed on families of patients under NIMV at home and explore the coping strategies they adopt. Methods: The study population consisted of 50 informal caregivers of patients with chronic respiratory failure under NIMV at home for at least 6 months. The burden of the families, as well as the adaptation strategies, were estimated by a modified version of the Family Burden Questionnaire validated in Greek. Results: Profound objective burden was reported in the field of social relations in 49%, in household management in 43.2%, in financial issues in 31.3% and in employment issues in 29.4% of the families. The subjective burden which the families experienced was usually lower and it was reported in household management in 33.4%, in employment issues in 29.4%, in social relations in 21.6% and in financial issues in 21.5% of the families. The strategies adopted by the families in order to cope with the imposed burden included reorientation of goals in 92.2%, resignation in 88.2%, passivity in 62.7%, hopefulness in 45.3%, ambivalence in 19.6% and guilt in 13.7% of the families. Conclusions: The families of patients under NIMV seem to face major problems (severe burden) in household management and their social relations. Families do not seem to subjectively experience the burden that is objectively recorded and, in the vast majority, they adopt healthy coping strategies.

Quality of life and burden in carers for persons with Chronic Obstructive Pulmonary Disease receiving oxygen therapy

“…This data is similar to that from other studies undertaken with carers (6,13,15) . Socially, it is predominantly the women who perform the role of carer in differing cultures, in spite of the majority also having little schooling and low monthly income (6,13,15) .…”

“…Studies carried out in Greece and Spain, with patients being mechanically ventilated in their homes, showed the carers to have a mean age of 47.9 and 51 years, respectively, confirming that the carers' mean age is below the patients' mean age (13)(14) .…”

“…Other studies undertaken with patients' carers in the same clinical conditions have also made similar findings. As the majority of carers are informal, relatives, and are not paid for the care tasks they perform, they have no way of meeting their needs without regular paid employment (13)(14) .…”

Home Ventilation for Children with Chronic Respiratory Failure in Istanbul

“…An increase in depressive symptoms and adverse health effects has been reported in mothers and parents who care for medically fragile or chronically ill children at home [27, 28]. All of the parents in this study initially worried about the home care and 2 mothers were diagnosed with depression, but they felt better as soon as they got used to the equipment.…”

Caregiving burden and quality of life of pneumoconiosis caregivers in Hong Kong

“…Caregivers experience a caregiving burden and deterioration in their quality of life (QOL). Tsara et al 6 found that taking care of patients with chronic respiratory failure greatly affects the lifestyles of caregivers, because the usual caregivers' tasks are compounded by the need to use mechanical ventilation, which requires skill and massive effort. Caregivers also carry a severe subjective burden because of their limited social relationships.…”