A Qualitative Investigation of Patients’ and Caregivers’ Experiences of Severe Sepsis*

Gallop, Katy; Kerr, Cicely; Nixon, Annabel; Verdian, L; Barney, Joseph B.; Beale, Richard

doi:10.1097/ccm.0000000000000613

Cited by 57 publications

(78 citation statements)

References 20 publications

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“…Without longitudinal data between hospital discharge and the time of the interview, it is plausible that other events explain the impairments identified, and the rates of symptom remission and functional recovery require direct examination. Also, although our results are consistent with the existing literature (18,19,59), we acknowledge the potential for recall bias regarding our qualitative analyses. Specifically, the ordering of the interview, with objective assessments followed by open-ended questions, may have resulted in a framing bias in terms of responses elicited.…”

Section: Original Researchsupporting

confidence: 82%

“…To augment existing support networks, peer support is another potentially valuable intervention (57,58) that could complement a redesign of multidisciplinary follow-up care that aims to better support survivors and their family and caregivers. Consistent with the qualitative experience of survivors of acute respiratory distress syndrome and sepsis (18,19,59), clinicians have a profound therapeutic impact on survivors during recovery in terms of their ability to reassure, educate, rehabilitate, prepare, and support survivors for life after critical illness. The ICU diary is one novel strategy to personalize this process and improve longterm neuropsychological health (60,61).…”

Section: Original Researchmentioning

confidence: 88%

“…Related, as the qualitative experience of survivors of critical illness have focused on severe sepsis and acute respiratory distress syndrome (18,19), it is largely unknown what challenges survivors face during recovery and what factors facilitate recovery. This contextual knowledge is essential as we design health care to meet the needs of survivors by bolstering their resilience and mitigating the risk of PICS.…”

mentioning

confidence: 99%

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Resilience in Survivors of Critical Illness in the Context of the Survivors’ Experience and Recovery

Maley¹,

et al. 2016

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Rationale: Post-intensive care syndrome (PICS), defined as new or worsening impairment in cognition, mental health, or physical function after critical illness, is an important development in survivors. Although studies to date have focused on the frequency of these impairments, fundamental questions remain unanswered regarding the survivor experience and the impact of the critical illness event on survivor resilience and recovery.Objectives: To examine the association between resilience and neuropsychological and physical function and to contextualize these findings within the survivors' recovery experience. Methods:We conducted a mixed-methods pilot investigation of resilience among 43 survivors from two medical intensive care units (ICUs) within an academic health-care system. We interviewed survivors to identify barriers to and facilitators of recovery in the ICU, on the medical ward, and at home, using qualitative methods. We used a telephone battery of standardized tests to examine resilience, neuropsychological and physical function, and quality of life. We examined PICS in two ways. First, we identified how frequently survivors were impaired in one or more domains 6-12 months postdischarge. Second, we identified how frequently survivors reported that neuropsychological or physical function was worse. Measurements and Main Results:Resilience was low in 28% of survivors, normal in 63% of survivors, and high in 9% of survivors. Resilience was inversely correlated with self-reported executive dysfunction, symptoms of anxiety, depression, and post-traumatic stress disorder, difficulty with self-care, and pain (P , 0.05). PICS was present in 36 survivors (83.7%; 95% confidence interval, 69.3-93.2%), whereas 23 survivors (53.5%; 95% confidence interval, 37.6-68.8%) reported worsening of neuropsychological or physical function after critical illness. We identified challenges along the recovery path of ICU survivors, finding that physical limitations and functional dependence were the most frequent challenges experienced in the ICU, medical ward, and on return to home. Spiritual and family support facilitated recovery. Conclusions:Resilience was inversely correlated with neuropsychological impairment, pain, and difficulty with self-care. PICS was present in most survivors of critical illness, and 54% reported neuropsychological or physical function to be worse, yet resilience was normal or high in most survivors. Survivors experienced many challenges during recovery, while spiritual and family support facilitated recovery.

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Section: Original Researchsupporting

confidence: 82%

Section: Original Researchmentioning

confidence: 88%

mentioning

confidence: 99%

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Resilience in Survivors of Critical Illness in the Context of the Survivors’ Experience and Recovery

Maley¹,

et al. 2016

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“…Relatives' qualitative accounts discuss the impact and causes of psychological stress. Relatives described feeling overwhelmed by anxiety and stress related to their role as a caregiver (Söderström et al ., ; Ågård et al ., ; Gallop et al ., ). Many cited intense feelings of fear of the future and uncertainty about becoming a caregiver (Söderström et al ., ; Ågård et al ., ; Frivold et al ., ).…”

Section: Health and Well‐beingmentioning

confidence: 88%

“…Thirteen studies reported moderate to severe depressive symptoms in 20–43% of relatives 2 to 3 months after ICU discharge (Van Pelt et al ., ; Douglas et al ., ; Lemiale et al ., ; Choi et al ., ; McAdam et al ., ; Hwang et al ., ; Sundararajan et al ., ; Andresen et al ., ; Gallop et al ., ; Cameron et al ., ; McPeake et al ., ; Warren et al ., ). Cameron et al .…”

Section: Health and Well‐beingmentioning

confidence: 97%

Outcomes and experiences of relatives of patients discharged home after critical illness: a systematic integrative review

Stayt

Venes

2018

Nursing in Critical Care

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Background Patients discharged from intensive care may experience psychological and physical deficits resulting in a long and complex rehabilitation upon discharge. Relatives are also vulnerable to psychological pathologies and diminished health‐related quality of life following the patients' critical illness. Relatives often provide care during the patients' rehabilitation, which may influence their health. Aim To report the outcomes and experiences of relatives of patients discharged home after critical illness. Design Systematic integrative review. Methods Electronic databases Cumulative Index of Nursing and Allied Health Literature, PubMed, Embase®, and PsychINFO® were searched using keywords, synonyms, and medical subject headings. Reference lists of articles and critical care journals were manually searched. Studies eligible for inclusion reported primary research and were published in English between 2007 and 2017. Studies were appraised using the Critical Appraisal Skills Programme checklists. Data were extracted and then analysed according to framework. Findings Twenty‐five studies were included: 19 quantitative, 4 qualitative, and 1 mixed method study. Three themes were identified: health and well‐being, employment and lifestyle, and caregiving role. Health and well‐being reports the incidence and significance of psychological morbidity such as post‐traumatic stress disorder, anxiety, and depression. Employment and lifestyle describes the impact of caregiving on the relative's ability to work and engage in usual social activities. The final theme describes and discusses the caregiving role in terms of activities of daily living, knowledge and skills, and adaption to the role. Conclusions There is a significant and meaningful impact on outcomes and experiences of relatives of patients discharged home after critical illness. Relatives' caregiving is embedded within the context of their psychological morbidity and social adjustment. Relevance to practice If informal care giving is to be sustainable, there is a need to design effective strategies of supporting families through all stages of the critical illness trajectory.

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Enhancing Recovery From Sepsis

Prescott

Angus

2018

JAMA

679

633

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In the months after hospital discharge for sepsis, management should focus on (1) identifying new physical, mental, and cognitive problems and referring for appropriate treatment, (2) reviewing and adjusting long-term medications, and (3) evaluating for treatable conditions that commonly result in hospitalization, such as infection, heart failure, renal failure, and aspiration. For patients with poor or declining health prior to sepsis who experience further deterioration after sepsis, it may be appropriate to focus on palliation of symptoms.

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A Qualitative Investigation of Patients’ and Caregivers’ Experiences of Severe Sepsis*

Cited by 57 publications

References 20 publications

Resilience in Survivors of Critical Illness in the Context of the Survivors’ Experience and Recovery

Resilience in Survivors of Critical Illness in the Context of the Survivors’ Experience and Recovery

Outcomes and experiences of relatives of patients discharged home after critical illness: a systematic integrative review

Enhancing Recovery From Sepsis

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