Changing support needs of survivors of complex critical illness and their family caregivers across the care continuum: A qualitative pilot study of Towards RECOVER

Czerwonka, Anna; Herridge, Margaret S.; Chan, Linda S.; Chu, Leslie M.; Matté, Andrea; Cameron, Jill I.

doi:10.1016/j.jcrc.2014.10.017

Cited by 85 publications

(167 citation statements)

References 31 publications

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“…This is consistent with data from others 13,45,46 who have reported that clinical fatigue and needs involve family caregivers of ICU subjects and persist for a long time.…”

Section: Discussionsupporting

confidence: 93%

“…Although some attention has been paid to the patient, the caregiver's strain and needs have been investigated mainly during the continuum of the hospital stay. 13,14 Limited investigations have explored the patients' clinical outcomes and HRQOL and impact on caregivers' burden after a long period of in-hospital stay and rehabilitation and during the following months back home. This is a very important point, since there is little knowledge about changes of long-stay ICU patients and caregiver characteristics during a follow-up after rehabilitation.…”

Section: See the Related Editorial On Page 566mentioning

confidence: 99%

“…On the contrary, items that had been considered at T0 of less importance, such as the need for psychological support and discretion, tended to increase (for details, see supplementary Table 4). (8)(9)(10)(11)(12)(13)(14)(15)(16)(17)(18)(19)(20) Data are n or median (interquartile range). Where not indicated, 25th to 75th percentiles were not calculated due to the low number of subjects (Ͻ3).…”

Section: Evaluation Of Subjects and Caregivers At T6mentioning

confidence: 99%

“…[8][9][10][11] Individualized rehabilitation can benefit ICU patients 12 and, indirectly, sustain their relatives who, once at home, start to experience the responsibility of providing care 12 with consequences for their personal needs. 13 …”

Section: Introductionmentioning

confidence: 99%

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Impact of Clinical and Quality of Life Outcomes of Long-Stay ICU Survivors Recovering From Rehabilitation on Caregivers' Burden

et al. 2016

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BACKGROUND: The objective of this work was to evaluate the time course of clinical and healthrelated quality of life outcomes of long-stay ICU survivors' and caregivers' burden. METHODS: The study included 23 subjects of mixed diagnosis (66 ؎ 11 y, body mass index 26.5 ؎ 5.6 kg/m 2 ) with a recent episode of acute respiratory failure needing in-hospital rehabilitation. Subjects and caregivers were evaluated at hospital discharge (T0, n ‫؍‬ 23) and 6 months later (T6, n ‫؍‬ 16). At T0 and T6, subjects' clinical status (Dependence Nursing Scale), FVC (percent-of-predicted FVC and percent-of-predicted FEV), maximum inspiratory/expiratory pressures, effort tolerance (sitto-stand, Takahashi test, 6-min walking distance), and disability (Barthel index) were evaluated. EuroQol-5D (EQ-5D), McGill Quality of Life, General Perceived Self-Efficacy Scale, and Hospital Anxiety and Depression Scale (HADS-A/HADS-D) were assessed. Caregivers' burden was measured by the Family Strain Questionnaire short form and Caregiver Needs Assessment. Correlation between subjects' clinical status and caregiver assessments was performed at T0. RESULTS: At T0, subjects showed compromised EQ-5D index (0.42 ؎ 0.28); 69% of caregivers had high Family Strain Questionnaire and moderate Caregiver Needs Assessment scores (30 ؎ 13). EQ-5D index was significantly related to Dependence Nursing Scale score (P < .001), percent-of-predicted FVC (P < .02), effort tolerance (all P < .01), disability (P < .001), and caregiver Family Strain Questionnaire score (P < .02). At T6, subjects significantly improved percent-of-predicted FVC (P < .05), maximum expiratory pressure (P < .01), effort tolerance (all P < .05), disability (P < .02), and EQ-5D index (P < .05), whereas caregivers' burden scores were unchanged. However, the percentage of caregivers with strain increased. CONCLUSIONS: In prolonged-ICU-stay survivors, EQ-5D index at hospital discharge is related to clinical status and caregivers' strain. Subjects' clinical status and EQ-5D index improves over time, but caregivers' burden remains high, suggesting the need to monitor/support caregivers.

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“…This is consistent with data from others 13,45,46 who have reported that clinical fatigue and needs involve family caregivers of ICU subjects and persist for a long time.…”

Section: Discussionsupporting

confidence: 93%

Section: See the Related Editorial On Page 566mentioning

confidence: 99%