Patients’ support needs during and after the critical illness event: a scoping review

BackgroundIntensive care survivors suffer chronic and potentially life-changing physical, psychosocial and cognitive sequelae, and supporting recovery is an international priority. As survivors transition from the intensive care unit to home, their support needs develop and change. An understanding of needs at different transition periods would help inform health service support for survivors. ObjectiveTo identify patients’ support needs (informational, emotional, instrumental, appraisal, spiritual) following an ICU admission. We mapped these against the Timing it Right framework reflecting the patient’s transition from intensive care (event/diagnosis); to ward (stabilisation/preparation); and discharge home (implementation/adaptation).Methods We conducted a scoping review of published qualitative research studies using the Arksey and O’Malley and Levac frameworks. We searched the major databases from 2000 to 2017. We included qualitative research studies that reported adult critical care survivors’ experiences of care and identified support needs with reference to the Timing it Right framework. Two reviewers independently screened, extracted and coded data. Data were analysed using a thematic framework approach. The review team reviewed and affirmed findings.FindingsFrom 3035 references we included 32 studies involving 702 patients. Studies were conducted in UK and Europe (n=17, 53%); Canada and the United States (n=6, 19%); Australasia (n=6, 19%); Hong Kong (n=1, 3%); Jordan (n=1, 3%) and multi-country (n=1, 3%). Patient needs were collected at various time-points from admission to 5-years post-hospital discharge. Informational, emotional, instrumental and appraisal social support needs differed when mapped against the time points of the Timing it Right framework and are presented in Table 1. Conclusions Our review is the first to identify the change in social support needs among intensive care survivors as they transition from intensive care to the home environment. The mapping of support needs across time may inform service provision.Information needs Initial event/ICU: what happened, diagnosis, prognosis, and illness event. Stabilisation/preparation phases: medical progress; treatments and medications for ongoing recovery.Implementation/adaptation (home/community): coping with long-term sequelae of the illness and stress; pamphlets/booklets. Emotional needs Initial event/ICU: coping with confusion, anxiety, memories; need for comfort and security.Stabilisation/preparation phases: security, family attendance; coping with relocation anxiety, isolation, depression about lack of physical progress.Implementation/adaptation (home/community): coping with vivid memories, terrifying dreams, worry, with feeling excluded from family; psychological counselling, support from community health care providers and a support group. Instrumental needsInitial event/ICU: managing lack of sleep, fatigue, pain, anxiety; nursing care. Stabilisation/preparation phases: physical and cognitive disabilities, re-establishing premorbid physical strength, training to relearn personal care tasks. Implementation/adaptation (home/community): performing household activities, gaining independence, achieving higher level cognitive function and pre-ICU level of strength, work.Appraisal needs Stabilisation/preparation phases: progress feedback from staff who knew them, appreciate the mental and physical transformation, and strain on family. Implementation/adaptation (home/community): reassurance from others who had been through the ICU experience and know what was ‘normal’.

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