Well-being in informal caregivers of survivors of acute respiratory distress syndrome.
ABSTRACT With limited community services, the complex rehabilitation period after critical illness is often the responsibility of family members who, as a result, may experience negative health outcomes. The objectives of this research were to a) identify aspects of the caregiving situation that are associated with caregivers' experiences of emotional distress and psychological well-being; and b) compare health-related quality of life of informal caregivers to survivors of acute respiratory distress syndrome (ARDS) with age- and gender-matched population values.
Cross-sectional survey of informal caregivers to ARDS survivors.
Toronto, Ontario, Canada.
Informal caregivers were individuals who were primarily responsible for providing and/or coordinating ARDS survivors' posthospital care and were not paid to do so.
The dependent variables were emotional distress, psychological well-being, and health-related quality of life. They were evaluated by the Center for Epidemiologic Studies Depression Scale, the Positive Affect Scale, and Medical Outcomes Study Short Form 36, respectively. Independent variables included severity of illness indicators, patient depression (Beck Depression Inventory II), aspects of the caregiving experience (care provided, lifestyle interference, personal gain), and psychosocial resources (mastery and social support). Caregivers experienced more emotional distress when they experienced more lifestyle interference, had lower levels of mastery, and were caring for ARDS survivors with more depressive symptoms (F3,42 = 15.69, p < .001, adjusted R = .50). In contrast, caregiver psychological well-being was associated with personal gains as a result of providing care and having more mastery and social support (F4,41 = 9.40, p < .001, adjusted R = .43). Caregivers reported poorer health-related quality of life across all domains of the Medical Outcomes Study Short Form 36 compared with age- and gender-matched population values.
Informal caregivers experience negative health outcomes that persist almost 2 yrs after ARDS. New approaches, such as family-centered rehabilitation, caregiver education, improved respite, and home care, may benefit informal caregivers.
Intensive Care Medicine 07/2014; 40(8). DOI:10.1007/s00134-014-3394-5 · 5.54 Impact Factor
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ABSTRACT: This study aimed to identify aspects of the caregiving situation contributing to family caregivers' psychological well-being. Longitudinal cohort study with structured quantitative interviews 1, 3, 6, and 12 months post stroke. A subset of participants also completed surveys 18 and 24 months post stroke. Participants included individuals hospitalized for their first stroke and their family caregivers. Psychological well-being was assessed by the Positive Affect Scale. A total of 399 stroke survivor, caregiver dyads completed the 1-year follow-up and 80 dyads completed the second year of follow-up. Using mixed effects modeling for longitudinal data, caregivers reported more psychological well-being when they provided more assistance to stroke survivors who had fewer symptoms of depression, better cognitive functioning, and who had more severe strokes. In addition, caregivers who maintained participation in valued activities had more mastery, gained personally providing care, were in better physical health, were older, and were from Quebec reported more psychological well-being. Caregivers followed for a second year post stroke reported better psychological well-being when caring for stroke survivors with fewer symptoms of depression and more severe strokes and when the caregivers had a greater sense of mastery and gained more personally providing care. Our findings contribute to the caregiver intervention development literature by identifying aspects of the caregiving situation that are associated with positive outcomes. Incorporating specific aspects, for example, strategies to enhance caregiver mastery into programs and services offered to caregivers may enhance their positive experiences with providing care and ultimately enhance the sustainability of the caregiving situation.Stroke 03/2014; 45(4). DOI:10.1161/STROKEAHA.113.004309 · 6.02 Impact Factor
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ABSTRACT: Family caregivers are a vital resource in the recovery of intensive care unit (ICU) survivors. Of concern, the stress associated with this role can negatively affect caregiver health. Fatigue, an important health indicator, has been identified as a predictor of various illnesses, greater use of health services, and early mortality. Examining the impact of fatigue on caregivers' physical health can assist in identifying critical time points and potential targets for intervention. To describe self-reported fatigue in caregivers of ICU survivors from patients' ICU admission to ≤2 weeks, two- and four-months post-ICU discharge. Patient-caregiver pairs were enrolled from a medical ICU. Caregiver fatigue was measured using the Short-Form 36 Health Survey Vitality subscale (SF-36 Vitality). Caregiver psychobehavioral stress responses included depressive symptoms, burden, health risk behaviors, and sleep quality. Patient data included self-reported physical symptoms and disposition (home vs. institution). Forty-seven patient-caregiver pairs were initially enrolled. Clinically significant fatigue (SF-36 Vitality ≤45) was reported by 43%-53% of caregivers across the time points, and these caregivers reported worse scores in measures of depressive symptoms, burden, health risk behaviors and sleep quality, and patients' symptom burden. In 26 caregivers with data for all time points (55% of the total sample), SF-36 Vitality scores showed trends of improvement when the patient returned home and greater impairment when institutionalization continued. In caregivers of ICU survivors, fatigue is common and potentially linked with poor psychobehavioral responses. Worsening fatigue was associated with greater symptom distress and long-term patient institutionalization.Journal of pain and symptom management 01/2014; 48(3). DOI:10.1016/j.jpainsymman.2013.09.018 · 2.42 Impact Factor