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: The impact of caring for children with deglutition disorders is poorly understood and tools to measure the unique concerns of these caregivers are lacking. The aims of this investigation were to develop and validate The Feeding/Swallowing Impact Survey (FS-IS) as an instrument designed to measure and improve understanding of caregiver issues. Demographic, economic, and dysphagic data were provided by the primary caregivers of 164 children (median age: 14 months, male: 78, female: 86) presenting for initial outpatient feeding/swallowing evaluations. Caregivers completed the PEDS-QL™ Family Impact Module (PEDS-QL™ FIM) and the FS-IS. A principal component analysis was conducted on the FS-IS to identify appropriate subscales. Concurrent validity was assessed by examining correlations between the FS-IS and PEDS-QL™ FIM. Caring for children with feeding/swallowing problems adversely impacted the Health-Related Quality of Life (HRQoL) of their caregivers. The FS-IS had a strong 3-factor solution to indicate 3 subscales: Daily Activities, Worry, and Feeding Difficulties. All three subscales and total score of the FS-IS correlated with PEDS-QL™ FIM. The FS-IS was validated as an instrument that may help clinicians detect specific factors that influence caregiver HRQoL, identify caregivers who might benefit from additional support, and ultimately improve the care of their children with feeding/swallowing disorders.Dysphagia 08/2014; DOI:10.1007/s00455-014-9560-7 · 1.60 Impact Factor
Australian Critical Care 06/2014; DOI:10.1016/j.aucc.2014.05.002 · 1.27 Impact Factor