42 research outputs found
Who Is Responsible for Nurse Wellbeing in a Crisis? A Single Centre Perspective
BACKGROUND:
Leadership during the COVID-19 pandemic often manifested as a command-and-control style of leadership which had detrimental emotional impacts on staff, particularly the nursing workforce. Leadership can have detrimental effects on staff wellbeing, or it can greatly boost their ability to handle a crisis. We sought to explore the interrelationship between leadership and nurses’ wellbeing in an inner-city university hospital during the initial wave of the pandemic.
METHODS:
We conducted secondary analyses of interview data collected during a hospital-wide evaluation of barriers and facilitators to changes implemented to support the surge of COVID-19 related admissions during wave one. Data were collected through semi-structured video interviews during May–July 2020. Interviews were analysed using Framework analysis.
RESULTS:
Thirty-one nurses participated, including matrons (n = 7), sisters (n = 8), and specialist nursing roles (n = 16). Three overarching themes were identified: the impact on nurses, personal factors, and organisational factors. The impact on nurses manifested as distress and fatigue. Coping and help-seeking behaviours were found to be the two personal factors which underpinned nurses’ wellbeing. The organisational factors that impacted nurses’ wellbeing included decision-making, duty, and teamwork.
CONCLUSIONS:
The wellbeing of the workforce is pivotal to the health service, and it is mutually beneficial for patients, staff, and leaders. Addressing how beliefs and misconceptions around wellbeing are communicated and accessing psychological support are key priorities to supporting nurses during pandemics
Impact of leadership on the nursing workforce during the COVID-19 pandemic
Background
The aim was to determine how the learning about protective factors from previous pandemics was implemented and the impact of this on nurses’ experience.
Methods
Secondary data analysis of semistructured interview transcripts exploring the barriers and facilitators to changes implemented to support the surge of COVID-19 related admissions in wave 1 of the pandemic. Participants represented three-levels of leadership: whole hospital (n=17), division (n=7), ward/department-level (n=8) and individual nurses (n=16). Interviews were analysed using framework analysis.
Results
Key changes that were implemented in wave 1 reported at whole hospital level included: a new acute staffing level, redeploying nurses, increasing the visibility of nursing leadership, new staff well-being initiatives, new roles created to support families and various training initiatives. Two main themes emerged from the interviews at division, ward/department and individual nurse level: impact of leadership and impact on the delivery of nursing care.
Conclusions
Leadership through a crisis is essential for the protective effect of nurses’ emotional well-being. While nursing leadership was made more visible during wave 1 of the pandemic and processes were in place to increase communication, system-level challenges resulting in negative experiences existed. By identifying these challenges, it has been possible to overcome them during wave 2 by employing different leadership styles to support nurse's well-being. Challenges and distress that nurses experience when making moral decisions requires support beyond the pandemic for nurse’s well-being. Learning from the pandemic about the impact of leadership in a crisis is important to facilitate recovery and lessen the impact in further outbreaks
Coping with psychological distress during COVID-19: a cautionary note of self-criticalness and personal resilience among healthcare workers
PURPOSE: The COVID-19 pandemic resulted in immense pressure on healthcare workers (HCWs) and healthcare systems worldwide. The current multi-centre evaluation sought to explore the association between coping behaviours and levels of psychological distress among HCWs working during the initial onset of COVID-19. DESIGN/METHODOLOGY/APPROACH: Between April and July 2020 HCWs at three urban hospitals in England were invited to complete an online survey measuring personal and professional characteristics, psychological distress and coping. A principal component analysis (PCA) identified components of coping and structural equation modelling (SEM) was used to test the relationship between components of coping and psychological distress. FINDINGS: A total of 2,254 HCWs participated (77% female, 67% white, 66% in clinical roles). Three components for coping were retained in the PCA analysis: external strategies, internal strategies and self-criticalness/substance use. SEM indicated that internally based coping was associated with lower levels of psychological distress, whereas externally based coping and self-criticalness were associated with greater psychological distress. The final model accounted for 35% of the variance in psychological distress. ORIGINALITY/VALUE: This multi-centre evaluation provides unique insight into the level of psychological distress among HCWs during the initial onset of the COVID-19 pandemic (2020) and associated coping strategies. Addressing self-criticalness and supporting cognitive-based internal coping strategies among HCWs may protect against prolonged exposure to psychological distress. Findings highlight the importance of developing a culture of professional resilience among this vital workforce as a whole rather than placing pressure on an individual's personal resilience
Associations between diagnostic time intervals and health-related quality of life, clinical anxiety and depression in adolescents and young adults with cancer:cross-sectional analysis of the BRIGHTLIGHT cohort
The association of diagnostic intervals and outcomes is poorly understood in adolescents and young adults with cancer (AYA). We investigated associations between diagnostic intervals and health-related quality of life (HRQoL), anxiety and depression in a large AYA cohort.Participants aged 12-24 completed interviews post-diagnosis, providing data on diagnostic experiences and the patient-reported outcomes (PROs) HRQoL, anxiety and depression. Demographic and cancer information were obtained from clinical and national records. Six diagnostic intervals were considered. Relationships between intervals and PROs were examined using regression models.Eight hundred and thirty participants completed interviews. In adjusted models, across 28 of 30 associations, longer intervals were associated with poorer PROs. Patient intervals (symptom onset to first seeing a GP) of ≥1 month were associated with greater depression (adjusted odds ratio (aOR):1.7, 95% Confidence Interval (CI):1.1-2.5) compared to <1 month. ≥3 pre-referral GP consultations were associated with greater anxiety (aOR:1.6, CI:1.1-2.3) compared to 1-2 consultations. Symptom onset to first oncology appointment intervals of ≥2 months was associated with impaired HRQoL (aOR:1.8, CI:1.2-2.5) compared to <2 months.Prolonged diagnostic intervals in AYA are associated with an increased risk of impaired HRQoL, anxiety and depression. Identifying and delivering interventions for this high-risk group is a priority
Association of Self-reported Presenting Symptoms With Timeliness of Help-Seeking Among Adolescents and Young Adults With Cancer in the BRIGHTLIGHT Study
Importance: Evidence regarding the presenting symptoms of cancer in adolescents and young adults can support the development of early diagnosis interventions. / Objective: To examine common presenting symptoms in adolescents and young adults aged 12 to 24 years who subsequently received a diagnosis of cancer and potential variation in time to help-seeking by presenting symptom. / Design, Setting, and Participants: This multicenter study is a cross-sectional analysis of the BRIGHTLIGHT cohort study, which was conducted across hospitals in England. Participants included adolescents and young adults aged 12 to 24 years with cancer. Information on 17 prespecified presenting symptoms and the interval between symptom onset and help-seeking (the patient interval) was collected through structured face-to-face interviews and was linked to national cancer registry data. Data analysis was performed from January 2018 to August 2019. / Exposures: Self-reported presenting symptoms. / Main Outcomes and Measures: The main outcomes were frequencies of presenting symptoms and associated symptom signatures by cancer group and the proportion of patients with each presenting symptom whose patient interval was longer than 1 month. / Results: The study population consisted of 803 adolescents and young adults with valid symptom information (443 male [55%]; 509 [63%] aged 19-24 years; 705 [88%] White). The number of symptoms varied by cancer group: for example, 88 patients with leukemia (86%) presented with 2 or more symptoms, whereas only 9 patients with melanoma (31%) presented with multiple symptoms. In total, 352 unique symptom combinations were reported, with the 10 most frequent combinations accounting for 304 patients (38%). Lump or swelling was reported by more than one-half the patients (419 patients [52%; 95% CI, 49%-56%]). Other common presenting symptoms across all cancers were extreme tiredness (308 patients [38%; 95% CI, 35%-42%]), unexplained pain (281 patients [35%; 95% CI, 32%-38%]), night sweats (192 patients [24%; 95% CI, 21%-27%]), lymphadenopathy (191 patients [24%; 95% CI, 21%-27%]), and weight loss (190 patients [24%; 95% CI, 21%-27%]). The relative frequencies of presenting symptoms also varied by cancer group; some symptoms (such as lump or swelling) were highly prevalent across several cancer groups (seen in >50% of patients with lymphomas, germ cell cancers, carcinomas, bone tumors, and soft-tissue sarcomas). More than 1 in 4 patients (27%) reported a patient interval longer than 1 month; this varied from 6% (1 patient) for fits and seizures to 43% (18 patients) for recurrent infections. / Conclusions and Relevance: Adolescents and young adults with cancer present with a broad spectrum of symptoms, some of which are shared across cancer types. These findings point to discordant presenting symptom prevalence estimates when information is obtained from patient report vs health records and indicate the need for further symptom epidemiology research in this population
Patient and public involvement to inform priorities and practice for research using existing healthcare data for children’s and young people’s cancers
Background:
In the United Kingdom, healthcare data is collected on all patients receiving National Health Service (NHS) care, including children and young people (CYP) with cancer. This data is used to inform service delivery, and with special permissions used for research. The use of routinely collected health data in research is an advancing field with huge potential benefit, particularly in CYP with cancer where case numbers are small and the impact across the life course can be significant.
Patient and public involvement (PPI) exercise aims:
Identify current barriers to trust relating to the use of healthcare data for research.
Determine ways to increase public and patient confidence in the use of healthcare data in research.
Define areas of research importance to CYP and their carers using healthcare data.
//
Methods:
Young people currently aged between 16 and 25 years who had a cancer diagnosis before the age of 20 years and carers of a young person with cancer were invited to take part via social media and existing networks of service users. Data was collected during two interactive online workshops totalling 5 h and comprising of presentations from health data experts, case-studies and group discussions. With participant consent the workshops were recorded, transcribed verbatim and analysed using thematic analysis.
//
Results:
Ten young people and six carers attended workshop one. Four young people and four carers returned for workshop two. Lack of awareness of how data is used, and negative media reporting were seen as the main causes of mistrust. Better communication and education on how data is used were felt to be important to improving public confidence. Participants want the ability to have control over their own data use. Late effects, social and education outcomes and research on rare tumours were described as key research priorities for data use.
//
Conclusions:
In order to improve public and patient trust in our use of data for research, we need to improve communication about how data is used and the benefits that arise
Experiences of fear of recurrence in patients with sarcoma
Background: Fear of cancer recurrence (FCR) is often described as the most distressing consequence of cancer and has a negative impact on quality of life. There have been few investigations into the FCR in patients with sarcomas. We sought to explore the patient's FCR after a sarcoma diagnosis to determine when these fears were presented and the strategies patients used to address these fears. Methods: This was a secondary analysis of qualitative semi-structured interview data from patients with sarcoma, as part of a study to develop a patient-reported outcome measure. This study included 121 patients from across the United Kingdom aged 13–82 years. Telephone and face-to-face interviews focused on the experiences of living with and beyond a sarcoma diagnosis, based on the domains of quality of life (physical, emotional, and social well-being). A secondary analysis was performed using the Common-Sense Model. Results: The following four key themes were identified: triggers for FCR (symptoms and events), discussion of FCR, consequences of FCR (negative impact on quality of life), and strategies used to deal with FCR. Conclusion: Patients with sarcoma reported a FCR at different stages of treatment and how these fears played a role in their daily lives. Despite these experiences, the identification and management of FCR have not been reported as a core component of routine clinical practice
Experiences of fear of recurrence in patients with sarcoma
Background:
Fear of cancer recurrence (FCR) is often described as the most distressing consequence of cancer and has a negative impact on quality of life. There have been few investigations into the FCR in patients with sarcomas. We sought to explore the patient's FCR after a sarcoma diagnosis to determine when these fears were presented and the strategies patients used to address these fears.
Methods:
This was a secondary analysis of qualitative semi-structured interview data from patients with sarcoma, as part of a study to develop a patient-reported outcome measure. This study included 121 patients from across the United Kingdom aged 13–82 years. Telephone and face-to-face interviews focused on the experiences of living with and beyond a sarcoma diagnosis, based on the domains of quality of life (physical, emotional, and social well-being). A secondary analysis was performed using the Common-Sense Model.
Results:
The following four key themes were identified: triggers for FCR (symptoms and events), discussion of FCR, consequences of FCR (negative impact on quality of life), and strategies used to deal with FCR.
Conclusion:
Patients with sarcoma reported a FCR at different stages of treatment and how these fears played a role in their daily lives. Despite these experiences, the identification and management of FCR have not been reported as a core component of routine clinical practice
Sex, Body Image, and Relationships: A BRIGHTLIGHT Workshop on Information and Support Needs of Adolescents and Young Adults
Longitudinal cohort study of the impact of specialist cancer services for teenagers and young adults on quality of life: outcomes from the BRIGHTLIGHT study.
OBJECTIVES: In England, healthcare policy advocates specialised age-appropriate services for teenagers and young adults (TYA), those aged 13 to 24 years at diagnosis. Specialist Principal Treatment Centres (PTC) provide enhanced TYA age-specific care, although many still receive care in adult or children's cancer services. We present the first prospective structured analysis of quality of life (QOL) associated with the amount of care received in a TYA-PTC DESIGN: Longitudinal cohort study. SETTING: Hospitals delivering inpatient cancer care in England. PARTICIPANTS: 1114 young people aged 13 to 24 years newly diagnosed with cancer. INTERVENTION: Exposure to the TYA-PTC defined as patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care. PRIMARY OUTCOME: Quality of life measured at five time points: 6, 12, 18, 24 and 36 months after diagnosis. RESULTS: Group mean total QOL improved over time for all patients, but for those receiving NO-TYA-PTC was an average of 5.63 points higher (95% CI 2.77 to 8.49) than in young people receiving SOME-TYA-PTC care, and 4·17 points higher (95% CI 1.07 to 7.28) compared with ALL-TYA-PTC care. Differences were greatest 6 months after diagnosis, reduced over time and did not meet the 8-point level that is proposed to be clinically significant. Young people receiving NO-TYA-PTC care were more likely to have been offered a choice of place of care, be older, from more deprived areas, in work and have less severe disease. However, analyses adjusting for confounding factors did not explain the differences between TYA groups. CONCLUSIONS: Receipt of some or all care in a TYA-PTC was associated with lower QOL shortly after cancer diagnosis. The NO-TYA-PTC group had higher QOL 3 years after diagnosis, however those receiving all or some care in a TYA-PTC experienced more rapid QOL improvements. Receipt of some care in a TYA-PTC requires further study.This paper presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Grant Reference Number RP-PG-1209-10013). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. The BRIGHTLIGHT Team acknowledges the support of the NIHR, through the Cancer Research Network. LAF and LH are funded by Teenage Cancer Trust, DPS holds research grant funding from Teenage Cancer Trust, and RR was (in part) supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart’s Health NHS Trust. RMT is a National Institute for Health Research (NIHR) Senior Nurse Research Leader. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. None of the funding bodies have been involved with study concept, design or decision to submit the manuscript. JA-G was subsidised by the Ramon & Cajal programme operated by the Ministry of Economy and Business (RYC-2016-19353), and the European Social Fund