Quality of life following prolonged critical illness: A mixed methods study

Survival following critical illness is associated with a significant burden of physical and psychosocial morbidity and recovery is often protracted and/or incomplete. Recovery has been measured using, almost exclusively, generic health-related quality of life (HRQoL) questionnaires. There is, however, an inexorable lack of consensus on the conceptual definition of HRQoL, and existing measures have tended to reflect overtly biomedical concerns such as morbidity and impairment at population level. Limited empirical or theoretical work has examined the extent to which widely used measures reflect the individual’s concerns, “health”-related and otherwise. The primary aims of this PhD are to examine HRQoL among a rarely studied sub group of the critically ill patient population: survivors of prolonged critical illness, and to explore the extent to which professionally endorsed measures capture their experiences of and perspectives on the recovery process. The implications of “patient-centredness” are both diverse and far-reaching in terms of policy, practice and critical care outcomes research, and are discussed throughout. A review of the literature among a well studied sub group of the patient population (survivors of Adult Respiratory Distress Syndrome) identified the widespread use of generic and ancillary measures which were invariably developed for use among other patient populations. This approach was seen to offer limited insight to the putative relationship between critical illness-related morbidity and HRQoL. Reflecting existing professional recommendations and practice, the Short Form 36 (SF-36) and the EuroQoL were administered by post to 20 survivors of prolonged critical illness at up to 6 months following ICU discharge. Each subsequently participated in a semi-structured interview, the purpose of which was to explore experiences and perceptions of ongoing morbidity within the contexts of the critical illness “journey” and, importantly, everyday life. A small number (n=5) participated in cognitive interview in order to explore both the everyday logistics of questionnaire completion and the often startling inconsistencies between verbal and questionnaire response. Analysis here revealed the unexpectedly diverse and normally hidden processes through which survivors interpreted and responded to standardised questionnaire items, challenging traditional (i.e. psychometric) notions of validity. Data from the semi-structured interviews were “mapped” onto the dimensions of the SF-36, revealing the highly contextualised and complex inter-relatedness of biomedically defined and ostensibly discrete aspects of experience. Morbidity was conceptualised by survivors in terms of the adaptive and interpretive processes adopted in everyday life (as opposed to a source of loss) and was generally under-reported in questionnaire form. An alternative explanatory framework for HRQoL was subsequently developed. Data were also analysed with reference to the “biographical narrative” of critical illness, a strategy which revealed the significance of survivors’ own stock of “life experience” (health-related and otherwise) in these interpretive and adaptive processes. The unexpectedly phlegmatic nature of survivors’ accounts directed attention to the narrative form, lending credibility to survivors’ claims that “things weren’t that bad”; accounts of seemingly intolerable morbidity were perceived, for example, as “a lucky escape”. This data also revealed, however, the influence of shortfalls in the processes and delivery of acute hospital rehabilitation upon the efficacy of these interpretive and adaptive processes. Mixed methods approaches to HRQoL, in summary, offer significant insights into survivors’ conceptualisations of morbidity, recovery, quality of life and the complex inter-relationships therein. Attention to the processes of adaptation also offers significant potential for the development of patient-centred measures of outcome and the expedition of the recovery process in ways which are most meaningful to survivors

Perspectives of Intensive Care patients and family members on competencies for Advanced Intensive Care nurses in Europe

BackgroundOne output from the International Nursing Advanced Competency-based Training for Intensive Care (INACTIC) collaboration is a set of core competencies for advanced practice Intensive Care Unit (ICU) nurses across Europe. Some European countries, such as the UK, have identified such competencies, however, these advanced practice roles are rarely practiced across the rest of Europe. The INACTIC competencies were developed with an expert panel of 184 ICU nurses from 20 countries. It is also important to examine what patients and relatives with experience of intensive care felt about these competencies. AimTo examine the views of recovered ICU patients and relatives regarding the INACTIC competencies.MethodsThree patient and relative focus groups were conducted in England (n=5), Scotland (n=4) and Greece (n=4) to discuss a lay version of the INACTIC competencies. Discussions were open ended, followed a topic guide, recorded and transcribed verbatim. Analysis followed a conventional thematic approach, with the findings discussed iteratively among the authors.ResultsThe feedback from across the focus groups resulted in three themes: 1) the importance of nurses being empowered to advocate for the patient; 2) the centrality of communication; and, 3) the impact of variability in ICU practices. There was a notable difference with the Greek focus group; because of restricted family visiting policies, relatives did not feel encouraged to participate in patient care.ConclusionsThe perspectives of patients and relatives largely aligned with the consensus of the INACTIC expert panel. Local differences in ICU experience highlight the changes that some ICUs would need to make for the INACTIC competencies to be embedded

Virtual visiting in intensive care during the COVID-19 pandemic: a qualitative descriptive study with ICU clinicians and non-ICU family team liaison members

© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/Objective: To understand the experiences and perceived benefits of virtual visiting from the perspectives of intensive care unit (ICU)-experienced clinicians and non-ICU-experienced family liaison team members. Design: Qualitative descriptive study. Setting: Adult intensive care setting across 14 hospitals within the UK National Health Service. Participants: ICU-experienced clinicians and non-ICU-experienced family liaison team members deployed during the first wave of the COVID-19 pandemic. Methods: Semistructured telephone/video interviews were conducted with ICU clinicians. Analytical themes were developed inductively following a standard thematic approach, using ‘family-centred care’ and ‘sensemaking’ as sensitising concepts. Results: We completed 36 interviews, with 17 ICU-experienced clinicians and 19 non-ICU-experienced family liaison team members. In the context of inperson visiting restrictions, virtual visiting offered an alternative conduit to (1) restoring the family unit, (2) facilitating family involvement, and (3) enabling sensemaking for the family. Virtual visits with multiple family members concurrently and with those living in distant geographical locations restored a sense of family unit. Family involvement in rehabilitation, communication and orientation activities, as well as presence at the end of life, highlighted how virtual visiting could contribute to family-centred care. Virtual visits were emotionally challenging for many family members, but also cathartic in helping make sense of their own emotions and experience by visualising their relatives in the ICU. Being able to see and interact with loved ones and their immediate care providers afforded important cues to enable family sensemaking of the ICU experience. Conclusions: In this UK qualitative study of clinicians using virtual ICU visiting, in the absence of inperson visiting, virtual visiting was perceived positively as an alternative that promoted family-centred care through virtual presence. We anticipate the perceived benefits of virtual visiting may extend to non-pandemic conditions through improved equity and timeliness of family access to the ICU by offering an alternative option alongside inperson visiting.Peer reviewedFinal Published versio

Increasing lay-people’s intentions to initiate CPR in out of hospital cardiac arrest:Results of a mixed-methods ‘before and after’ pilot study of a behavioural text message intervention (BICeP)

BACKGROUND: Prompt, effective cardio-pulmonary resuscitation (CPR) increases survival in out-of-hospital cardiac arrest. However, CPR is often not provided, even by people with training. Low confidence, perceptions of risks and high emotion can prevent initiation of CPR. Behaviour-change techniques may be helpful in increasing CPR rates. AIM: To pilot a text-message behavioural intervention designed to increase intentions to initiate CPR, explore participant responses and pilot methods for future randomised controlled trial of effectiveness. METHODS: A ‘before and after’ pilot study plus qualitative interviews was undertaken. Participants were lay-people who had undertaken CPR training in previous 2 years. Participants were sent an intervention, comprising 35 text-messages containing 14 behaviour-change techniques, to their mobile phone over 4–6 weeks. Primary outcome: intentions to initiate CPR assessed in response to 4 different scenarios. Secondary outcomes: theory-based determinants of intention (attitudes, subjective norms, perceived behavioural control and self-efficacy) and self-rated competence. RESULTS: 20 participants (6 female, 14 male), aged 20–84 provided baseline data. 17 received the full suite of 35 text messages.15 provided follow-up data. Intentions to perform CPR in scenarios where CPR was indicated were high at baseline and increased (18.1 ± 3.2–19.5 ± 1.8/21) after the intervention, as did self-efficacy and self-rated competency. Self-efficacy, attitudes, perceived behavioural control and subjective norms were positively correlated with intentions. Qualitative data suggest the intervention was perceived as useful. Additional options for delivery format and pace were suggested. CONCLUSIONS: Pilot-testing suggests a text-message intervention delivered after CPR training is acceptable and may be helpful in increasing/maintaining intentions to perform CPR

Work-related stress:The impact of COVID-19 on critical care and redeployed nurses: A mixed-methods study

Lisa Salisbury - ORCID: 0000-0002-1400-3224 https://orcid.org/0000-0002-1400-3224Replaced AM with VoR 2021-07-08.Introduction: We need to understand the impact of COVID-19 on Critical Care (CCNs) and redeployed nurses and NHS organisations. Methods and analysis: This is a mixed methods study (QUANT – QUAL), underpinned by a theoretical model of occupational stress, the Job-Demand Resources Model (JD-R). Participants are critical care and redeployed nurses from Scottish and three large English units. Phase one is a cross-sectional survey in part replicating a pre-COVID-19 study and results will be compared with this data. Linear and logistic regression analysis will examine the relationship between antecedent, demographic, and professional variables on health impairment (burnout syndrome, mental health, posttraumatic stress symptoms), motivation (work engagement, commitment), and organisational outcomes (intention to remain in critical care nursing and quality of care). We will also assess the usefulness of a range of resources provided by the NHS and professional organisations. To allow in-depth exploration of individual experiences, phase two will be one-to-one semi-structured interviews with 25 CCNs and 10 redeployed nurses. The JD-R model will provide the initial coding framework to which the interview data will be mapped. The remaining content will be analysed inductively to identify and chart content that is not captured by the model. In this way the adequacy of the JD-R model is examined robustly and its expression in this context will be detailed. Ethics and dissemination: Ethics approval was granted from the University of Aberdeen CERB2020101993. We plan to disseminate findings at stakeholder events, publish in peer reviewed journals and at present at national and international conferences.https://doi.org/10.1136/bmjopen-2021-05132611pubpub

Communication and virtual visiting for families of patients in intensive care during the COVID-19 pandemic:A UK National Survey

© 2021 by the American Thoracic Society. This article is open access and distributed under the terms of the Creative Commons Attribution Non-Commercial No Derivatives License 4.0.https://creativecommons.org/licenses/by-nc-nd/4.0/Rationale: Restriction or prohibition of family visiting intensive care units (ICUs) during the coronavirus disease (COVID-19) pandemic poses substantial barriers to communication and family- and patient-centered care. Objectives: To understand how communication among families, patients, and the ICU team was enabled during the pandemic. The secondary objectives were to understand strategies used to facilitate virtual visiting and associated benefits and barriers. Methods: A multicenter, cross-sectional, and self-administered electronic survey was sent (June 2020) to all 217 UK hospitals with at least one ICU. Results: The survey response rate was 54%; 117 of 217 hospitals (182 ICUs) responded. All hospitals imposed visiting restrictions, with visits not permitted under any circumstance in 16% of hospitals (28 ICUs); 63% (112 ICUs) of hospitals permitted family presence at the end of life. The responsibility for communicating with families shifted with decreased bedside nurse involvement. A dedicated ICU family-liaison team was established in 50% (106 ICUs) of hospitals. All but three hospitals instituted virtual visiting, although there was substantial heterogeneity in the videoconferencing platform used. Unconscious or sedated ICU patients were deemed ineligible for virtual visits in 23% of ICUs. Patients at the end of life were deemed ineligible for virtual visits in 7% of ICUs. Commonly reported benefits of virtual visiting were reducing patient psychological distress (78%), improving staff morale (68%), and reorientation of patients with delirium (47%). Common barriers to virtual visiting were related to insufficient staff time, rapid implementation of videoconferencing technology, and challenges associated with family members’ ability to use videoconferencing technology or access a device. Conclusions: Virtual visiting and dedicated communication teams were common COVID-19 pandemic innovations addressing the restrictions to family ICU visiting, and they resulted in valuable benefits in terms of patient recovery and staff morale. Enhancing access and developing a more consistent approach to family virtual ICU visits could improve the quality of care, both during and outside of pandemic conditions.Peer reviewedFinal Published versio

Identifying patients’ support needs following critical illness: a scoping review of the qualitative literature

Background: Intensive 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.Methods: In this scoping review, we categorised patients’ support needs using House’s Social Support Needs framework (informational, emotional, instrumental, appraisal) and mapped these against the Timing it Right framework reflecting the patient’s transition from intensive care (event/diagnosis); to ward (stabilisation/preparation); anddischarge home (implementation/adaptation). We searched electronic databases from 2000 to 2017 for qualitative research studies reporting adult critical care survivors’ experiences of care. Two reviewers independently screened, extracted and codeddata. Data were analysed using a thematic framework approach.Results: From 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 multicountry (n=1, 3%). Across the trajectory of recovery, informational, emotional, instrumental, appraisal and spiritual support needs were evident, and the nature and intensity of need differed when mapped against the Timing it Right framework.Conclusions: This review is the first to identify the change in social support needsamong intensive care survivors as they transition from intensive care to the home environment. An understanding of needs at different transition periods would help inform health service provision and support for survivors

Patient and carer experience of hospital-based rehabilitation from intensive care to hospital discharge: mixed methods process evaluation of the RECOVER randomised clinical trial

Objectives To explore and compare patient/carer experiences of rehabilitation in the intervention and usual care arms of the RECOVER trial (ISRCTN09412438); a randomised controlled trial of a complex intervention of post-intensive care unit (ICU) acute hospital-based rehabilitation following critical illness.Design Mixed methods process evaluation including comparison of patients' and carers' experience of usual care versus the complex intervention. We integrated and compared quantitative data from a patient experience questionnaire (PEQ) with qualitative data from focus groups with patients and carers.Setting Two university-affiliated hospitals in Scotland.Participants 240 patients discharged from ICU who required ?48?hours of mechanical ventilation were randomised into the trial (120 per trial arm). Exclusion criteria comprised: primary neurologic diagnosis, palliative care, current/planned home ventilation and age 3?months postrandomisation.Interventions A complex intervention of post-ICU acute hospital rehabilitation, comprising enhanced physiotherapy, nutritional care and information provision, case-managed by dedicated rehabilitation assistants (RAs) working within existing ward-based clinical teams, delivered between ICU discharge and hospital discharge. Comparator was usual care.Outcome measures A novel PEQ capturing patient-reported aspects of quality care.Results The PEQ revealed statistically significant between-group differences across 4 key intervention components: physiotherapy (p=0.039), nutritional care (p=0.038), case management (p=0.045) and information provision (

Development of the support needs after ICU (SNAC) questionnaire.

Funder: Intensive Care Foundation Research Priority Award, UKAIMS: To develop a questionnaire to identify Intensive Care survivor needs at key transitions during the recovery process, and assess its validity and reliability in a group of ICU survivors. METHODS: Development of the Support Needs After ICU (SNAC) questionnaire was based on a systematic scoping review, and analysis of patient interviews (n = 22). Face and content validity were assessed by service users (n = 12) and an expert panel of healthcare professionals (n = 6). A pilot survey among 200 ICU survivors assessed recruitment at one of five different stages after ICU discharge [(1) in hospital, (2) < 6 weeks, (3) 7 weeks to 6 months, (4) 7 to 12 months, or (5) 12 to 24 months post-hospital discharge]; to assess reliability of the SNAC questionnaire; and to conduct exploratory data analysis. Reliability was determined using Cronbach's alpha for internal consistency; intraclass correlation coefficients for test-retest reliability. We explored correlations with sociodemographic variables using Pearson's correlation coefficient; differences between questionnaire scores and patient demographics using one-way ANOVA. RESULTS: The SNAC questionnaire consisted of 32 items that assessed five categories of support needs (informational, emotional, instrumental [e.g. practical physical help, provision of equipment or training], appraisal [e.g. clinician feedback on recovery] and spiritual needs). ICU survivors were recruited from Northern Ireland, England and Scotland. From a total of 375 questionnaires distributed, 202 (54%) were returned. The questionnaire had high internal consistency (0.97) and high test-retest reliability (r = 0.8) with subcategories ranging from 0.3 to 0.9. CONCLUSIONS: The SNAC questionnaire appears to be a comprehensive, valid, and reliable questionnaire. Further research will enable more robust examination of its properties e.g. factor analysis, and establish its utility in identifying whether patients' support needs evolve over time. RELEVANCE TO CLINICAL PRACTICE: The SNAC questionnaire has the potential to be used to identify ICU survivors' needs and inform post-hospital support services

“Like fighting a fire with a water pistol”: A qualitative study of the work experiences of critical care nurses during the COVID ‐19 pandemic

From Wiley via Jisc Publications RouterHistory: received 2023-04-03, rev-recd 2023-05-19, accepted 2023-06-21, epub 2023-07-28Article version: VoRPublication status: PublishedFunder: Health Services and Delivery Research Programme; doi: http://dx.doi.org/10.13039/501100002001; Grant(s): NIHR132068Lisa Salisbury - ORCID: 0000-0002-1400-3224 https://orcid.org/0000-0002-1400-3224Aim: To understand the experience of critical care nurses during the COVID‐19 pandemic, through the application of the Job‐Demand‐Resource model of occupational stress. Design: Qualitative interview study. Methods: Twenty‐eight critical care nurses (CCN) working in ICU in the UK NHS during the COVID‐19 pandemic took part in semi‐structured interviews between May 2021 and May 2022. Interviews were guided by the constructs of the Job‐Demand Resource model. Data were analysed using framework analysis. Results: The most difficult job demands were the pace and amount, complexity, physical and emotional effort of their work. Prolonged high demands led to CCN experiencing emotional and physical exhaustion, burnout, post‐traumatic stress symptoms and impaired sleep. Support from colleagues and supervisors was a core job resource. Sustained demands and impaired physical and psychological well‐being had negative organizational consequences with CCN expressing increased intention to leave their role. Conclusions: The combination of high demands and reduced resources had negative impacts on the psychological well‐being of nurses which is translating into increased consideration of leaving their profession. Implications for the Profession and/or Patient Care: The full impacts of the pandemic on the mental health of CCN are unlikely to resolve without appropriate interventions. Impact: Managers of healthcare systems should use these findings to inform: (i) the structure and organization of critical care workplaces so that they support staff to be well, and (ii) supportive interventions for staff who are carrying significant psychological distress as a result of working during and after the pandemic. These changes are required to improve staff recruitment and retention. Reporting Method: We used the COREQ guidelines for reporting qualitative studies. Patient and Public Contribution: Six CCN provided input to survey content and interview schedule. Two authors and members of the study team (T.S. and S.C.) worked in critical care during the pandemic.pubpu