title: Well-being in informal caregivers of survivors of acute respiratory distress syndrome.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  Cross-sectional survey of informal caregivers to ARDS survivors.
  
  
  METHODS
  Toronto, Ontario, Canada.
  
  
  METHODS
  Informal caregivers were individuals who were primarily responsible for providing and/or coordinating ARDS survivors' posthospital care and were not paid to do so.
  
  
  METHODS
  None.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: University Health Network, Women's Health Program, Toronto, ON.
authors.forename: Jill I
authors.initials: JI
authors.lastname: Cameron
authors.forename: Margaret S
authors.initials: MS
authors.lastname: Herridge
authors.forename: Catherine M
authors.initials: CM
authors.lastname: Tansey
authors.forename: Mary Pat
authors.initials: MP
authors.lastname: McAndrews
authors.forename: Angela M
authors.initials: AM
authors.lastname: Cheung
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D003266:Continuity of Patient Care; D003430:Cross-Sectional Studies; D005260:Female; D005500:Follow-Up Studies; D006701:Home Nursing; D006801:Humans; D016014:Linear Models; D008137:Longitudinal Studies; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D015999:Multivariate Analysis; D009864:Ontario; D011336:Probability; D011788:Quality of Life; D012128:Respiratory Distress Syndrome / Q000175:diagnosis / Q000628:therapy*; D018570:Risk Assessment; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D017741:Survivors