Experiences of adults with adult-onset type 1 diabetes: a cross-sectional study.

BACKGROUND: Type 1 diabetes (T1D) is a chronic, autoimmune disease where the pancreas does not produce enough insulin. T1D requires ongoing management across the lifespan through insulin regulation, monitoring of blood glucose levels, and adherence to strict diet and exercise plans. The most recent National Diabetes Services Scheme Australian Diabetes Map indicates that 129 210 Australians currently have T1D. Traditionally considered a childhood disease, more than half of all T1D diagnoses actually occur in adults aged >20 years. The aim of this study was to examine the experiences of individuals living with adult-onset T1D in relation to their diagnosis experience, access to health care, and post-diagnostic wellbeing. METHODS: An exploratory, cross-sectional study was undertaken. Participants completed an online survey delivered via Qualtrics detailing their experiences with adult-onset T1D. The survey contained four domains: (1) demographic information; (2) diagnosis experience; (3) access to care; and (4) post-diagnostic wellbeing, including the Hospital Anxiety and Depression Scale (HADS); and the Diabetes Distress Scale (T1-DDS). Data analysis was conducted using STATA SE (v16). Descriptive statistics (means, counts) were used to describe continuous data, and frequencies and odds ratios were used to describe categorical data. RESULTS: One hundred and twenty adults (mean age 49 years; 78% female) with adult-onset T1D (mean age at diagnosis 37 years) completed the survey. The most common symptoms prior to diagnosis were excess thirst, fatigue, frequent urination, and unintended weight loss. Half (50%) the sample received their T1D diagnosis from a general practitioner (GP). Several participants reported being misdiagnosed by their GP initially, representing an unadjusted odds ratio of 3.1 (95% CI 1.5, 6.2). Nearly half of all participants presented with anxiety (mean 7 (s.d. 4)) on the HADS, and most reported moderate levels of diabetes-related distress according to the T1-DDS. CONCLUSIONS: These findings provide a starting point to understanding the experiences of adults living with adult-onset T1D and can be used to raise awareness of their challenges and needs. These exploratory findings can also be used to inform a larger, population-based study.

Codesigning a patient support portal with health professionals and men with prostate cancer: An action research study.

INTRODUCTION: The supportive care needs of men with prostate cancer (PCa) have been well documented, but little is known about how an online portal may address these. This study sought to determine priority issues facing men with PCa, barriers and enablers to accessing care and whether health professionals (HPs) and men would support the inclusion of a patient-reported outcome (PRO) comparator tool. METHODS: We conducted four online focus groups with HPs recruited from healthcare services in Victoria, followed by seven online codesign workshops with men with PCa, recruited through the Victorian Prostate Cancer Outcomes Registry, Prostate Cancer Foundation Australia and the Cancer Council Victoria. Men were eligible to participate if they had lived experience of PCa and access to the internet. We analysed focus groups thematically. Workshops were analysed using descriptive-content analysis. RESULTS: HPs (n = 39) highlighted that men had shifting priorities over time, but noted the importance of providing information to men in lay terms to assist in treatment decision-making and side-effect management. HPs identified key enablers to men accessing support services such as practice nurses, partners and having men share their stories with each other. HPs raised financial, cultural, geographic and emotional barriers to accessing supportive care. Inclusion of a PRO comparator tool received mixed support from HPs, with 41% (n = 16) supportive, 49% (n = 19) unsure and 10% (n = 4) not supportive. Men involved in workshops (n = 28) identified informational needs to assist in treatment decision-making and side-effect management as the top priority throughout care. Men described support groups and practice nurses as key enablers. Short consultation times and complex information were described as barriers. Unlike HPs, all men supported the inclusion of a PRO comparator tool in a portal. CONCLUSIONS: Our findings suggest that a patient support portal should provide information in lay terms that address the shifting priorities of men with PCa. Men with PCa would welcome the development of a portal to centralize support information and a PRO comparator tool to prompt health-seeking behaviour. Future research will implement these findings in the development of a portal, and pilot and evaluate the portal within a population-based sample. PATIENT OR PUBLIC CONTRIBUTION: This project adopted a codesign approach including both men with PCa and HPs involved in PCa care. Men with PCa also formed part of the study's steering committee and consumer advisory groups. HPs were consulted in a serious of online focus groups. Subsequently, men with PCa and their support persons participated in workshops. Men with PCa were also involved in the preparation of this manuscript.

Experiences of personal protective equipment by Australian healthcare workers during the COVID-19 pandemic, 2020: A cross-sectional study.

The aim of this study was to capture Australian frontline healthcare workers' (HCWs) experiences with personal protective equipment (PPE) during the COVID-19 pandemic in 2020. This was a cross-sectional study using an online survey consisting of five domains: demographics; self-assessment of COVID risk; PPE access; PPE training and confidence; and anxiety. Participants were recruited from community and hospital healthcare settings in Australia, including doctors, nurses, allied health professionals, paramedics, and aged care and support staff. Data analysis was descriptive with free-text responses analysed using qualitative content analysis and multivariable analysis performed for predictors of confidence, bullying, staff furlough and anxiety. The 2258 respondents, comprised 80% women, 49% doctors and 40% nurses, based in hospital (39%) or community (57%) settings. Key findings indicated a lack of PPE training (20%), calls for fit testing, insufficient PPE (25%), reuse or extended use of PPE (47%); confusion about changing guidelines (48%) and workplace bullying over PPE (77%). An absence of in-person workplace PPE training was associated with lower confidence in using PPE (OR 0.21, 95%CI 0.12, 0.37) and a higher likelihood of workplace bullying (OR 1.43; 95% CI 1.00, 2.03) perhaps reflecting deficiencies in workplace culture. Deficiencies in PPE availability, access and training linking to workplace bullying, can have negative physical and psychological impacts on a female dominant workforce critical to business as usual operations and pandemic response.

Experience and perspectives of infection prevention staff of the COVID-19 response in Australian hospitals.

BACKGROUND: Hospital infection prevention and control (IPC) staff have played a key role in adapting and implementing jurisdictional COVID-19 policy during the current pandemic. We aimed to describe the experiences of IPC staff in Australian hospitals during the COVID-19 pandemic to inform future pandemic preparedness plans. METHODS: A cross-sectional study involving an online survey distributed to IPC practitioners employed in Australian hospitals. Survey content was informed by in-depth interviews, and addressed work conditions, redeployed workforce, personal protective equipment, communication, and guidelines. Participants were recruited through the mailing lists of Australasian College of Infection Prevention and Control and the Australasian Society of Infectious Diseases. RESULTS: We received fully or partially completed responses from 160 participants, including 38 (24%) and 122 (76%) with nursing and medical backgrounds, respectively. Respondents reported access to sufficient information about PPE (75%, 114/152), PPE was of sufficient quantity (77%, 117/152) and was of sufficient quality (70%, 106/152). Barriers to infection prevention guideline implementation included frequently changing guidelines (57%, 84/148), timing of updates (65%, 96/148) and contradictory sources of information (64%, 95/148). Respondents described a need for better communication channels from government authorities to hospital IPC teams. All respondents described an increase in workload leading to difficulty completing work (63%, 97/154) and feeling burnt out (48%, 74/154). CONCLUSIONS: These data identify avoidable barriers to implementation of COVID-19 infection prevention guidance in Australian hospitals. These findings can inform future national preparedness strategies.

When immunosuppression and COVID-19 intersect: An exploratory qualitative study of young lung transplant recipient perceptions of daily life during a pandemic.

BACKGROUND: The COVID-19 pandemic poses an increased risk of infection, severe illness, hospitalization and mortality for young people who are immunosuppressed, including lung transplant (LTx) recipients. The aim of this study was to explore the intersection between immunosuppression and COVID-19, through the impacts of the pandemic upon the daily lives of young LTx recipients residing in the Australian state of Victoria. METHODS: An exploratory qualitative research study was undertaken via consumer engagement. A purposive sample of 11 LTx recipients, residing in Victoria, was recruited during the first year of the COVID-19 pandemic. Semi-structured interviews were conducted to gain insights into their daily life and healthcare experiences, including the impacts of the COVID-19 pandemic. Data were interpreted using thematic analysis. RESULTS: Four major themes were identified: (1) occupational deprivation due to the intersection of COVID-19 and lung transplant; (2) resilience and acceptance of restrictions; (3) infection control and vigilance about risk; and (4) care experiences of telehealth. CONCLUSIONS: Occupational deprivation emerged as a common theme, specifically in the context of loss of access to meaningful everyday activities of developmental significance. However, participants also commonly reflected upon their ability to flexibly adjust to changing socially regulated community and healthcare environments. A high degree of acceptance and compliance with public health orders was self-reported, may be indicative of this cohort's long-term experience of chronic illness and their understanding of the importance of minimizing infection risks. Youth-informed healthcare strategies were identified as keystone to engaging them in institutional change and program adaptation during a pandemic.

Emergency physicians' experience of stress during resuscitation and strategies for mitigating the effects of stress on performance.

OBJECTIVE: This study explored the perspectives and behaviours of emergency physicians (EPs), regularly involved in resuscitation, to identify the sources and effects of any stress experienced during a resuscitation as well as the strategies employed to deal with these stressors. METHODS: This was a two-centre sequential exploratory mixed-methods study of EPs consisting of a focus group, exploring the human factors related to resuscitation, and an anonymous survey. Between April and June 2020, the online survey was distributed to all EPs working at Australia's largest two major trauma centres, both in Melbourne, and investigated sources of stress during resuscitation, impact of stress on performance, mitigation strategies used, impact of the COVID-19 pandemic on stress and stress management training received. Associations with gender and years of clinical practice were also examined. RESULTS: 7 EPs took part in the focus group and 82 responses to the online survey were received (81% response rate). The most common sources of stress reported were resuscitation of an 'unwell young paediatric patient' (81%, 95% CI 70.6 to 87.6) or 'unwell pregnant patient' (71%, 95% CI 60.1 to 79.5) and 'conflict with a team member' (71%, 95% CI 60.1 to 79.5). The most frequently reported strategies to mitigate stress were 'verbalising a plan to the team' (84%, 95% CI 74.7 to 90.5), 'implementing a standardised/structured approach' (73%, 95% CI 62.7 to 81.6) and 'asking for help' (57%, 95% CI 46.5 to 67.5). 79% (95% CI 69.3 to 86.6) of EPs reported that they would like additional training on stress management. Junior EPs more frequently reported the use of 'mental rehearsal' to mitigate stress during a resuscitation (62% vs 22%; p<0.01) while female EPs reported 'asking for help' as a mitigator of stress more frequently than male EPs (79% vs 47%; p=0.01). CONCLUSIONS: Stress is commonly experienced by EPs during resuscitation and can impact decision-making and procedural performance. This study identifies the most common sources of stress during a resuscitation as well as the strategies that EPs use to mitigate the effects of stress on their performance. These findings may contribute to the development of tailored stress management training for critical care clinicians.

Tweets by People With Arthritis During the COVID-19 Pandemic: Content and Sentiment Analysis.

BACKGROUND: Emerging evidence suggests that people with arthritis are reporting increased physical pain and psychological distress during the COVID-19 pandemic. At the same time, Twitter's daily usage has surged by 23% throughout the pandemic period, presenting a unique opportunity to assess the content and sentiment of tweets. Individuals with arthritis use Twitter to communicate with peers, and to receive up-to-date information from health professionals and services about novel therapies and management techniques. OBJECTIVE: The aim of this research was to identify proxy topics of importance for individuals with arthritis during the COVID-19 pandemic, and to explore the emotional context of tweets by people with arthritis during the early phase of the pandemic. METHODS: From March 20 to April 20, 2020, publicly available tweets posted in English and with hashtag combinations related to arthritis and COVID-19 were extracted retrospectively from Twitter. Content analysis was used to identify common themes within tweets, and sentiment analysis was used to examine positive and negative emotions in themes to understand the COVID-19 experiences of people with arthritis. RESULTS: In total, 149 tweets were analyzed. The majority of tweeters were female and were from the United States. Tweeters reported a range of arthritis conditions, including rheumatoid arthritis, systemic lupus erythematosus, and psoriatic arthritis. Seven themes were identified: health care experiences, personal stories, links to relevant blogs, discussion of arthritis-related symptoms, advice sharing, messages of positivity, and stay-at-home messaging. Sentiment analysis demonstrated marked anxiety around medication shortages, increased physical symptom burden, and strong desire for trustworthy information and emotional connection. CONCLUSIONS: Tweets by people with arthritis highlight the multitude of concurrent concerns during the COVID-19 pandemic. Understanding these concerns, which include heightened physical and psychological symptoms in the context of treatment misinformation, may assist clinicians to provide person-centered care during this time of great health uncertainty.