COVID-19 Public Health Measures and Patient and Public Involvement in Health and Social Care Research: An Umbrella Review.

An umbrella review of previously published systematic reviews was conducted to determine the nature and extent of the patient and public involvement (PPI) in COVID-19 health and social care research and identify how PPI has been used to develop public health measures (PHM). In recent years, there has been a growing emphasis on PPI in research as it offers alternative perspectives and insight into the needs of healthcare users to improve the quality and relevance of research. In January 2022, nine databases were searched from 2020-2022, and records were filtered to identify peer-reviewed articles published in English. From a total of 1437 unique records, 54 full-text articles were initially evaluated, and six articles met the inclusion criteria. The included studies suggest that PHM should be attuned to communities within a sociocultural context. Based on the evidence included, it is evident that PPI in COVID-19-related research is varied. The existing evidence includes written feedback, conversations with stakeholders, and working groups/task forces. An inconsistent evidence base exists in the application and use of PPI in PHM. Successful mitigation efforts must be community specific while making PPI an integral component of shared decision-making.

COVID-19 IDD: Findings from a global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers.

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare.  Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers' wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff.  Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.

Understanding and Tackling the Complex Challenges of Homelessness and Health.

Homelessness is a complex global public health challenge [...].

Work environment challenging Irish public health nurses' care quality: First postnatal visit.

OBJECTIVES: Exploring views and experiences of public health nurses of their work environment and measurement of care practices at first postnatal visits. DESIGN: An exploratory qualitative design. Data collected using four focus groups and analyzed using thematic analysis. SAMPLE: Nineteen public health nurses from four health service regions in Ireland participated. RESULTS: Two themes emerged. Theme one identified "challenges of providing a quality service." Public health nurses identified workload demands and that the working environment can detract from the ability to provide a quality service. Challenges within the home, language barriers, and lack of support from management were key issues. Theme two identified "challenges of measuring quality of public health nursing practice." While Measuring practice through quantitative outcomes such as key performance indicators were viewed as inadequate to measure the quality of care provided, positive views of using quality process indicators to measure the quality of their practice emerged. CONCLUSIONS: Key issues concern the working environment of public health nurses and challenges of providing and measuring care practices. Absence of appropriate supports and resources means public health nurses work hard to provide quality care. Public health nurses were confident they would score high on quality process measurements of their practice.

Colliding worlds: Family carers' experiences of balancing work and care in Ireland during the COVID-19 pandemic.

The Coronavirus disease 2019 (COVID-19) pandemic public health and social protective measures imposed globally resulted in partial or full closure of key services and supports for services and supports for people with a disability, chronic illness or age-related dependency. This caused huge disruption to care provision and family carers were relied upon to assume this care at home. Many family carers, including those in employment, found themselves navigating additional care responsibilities without 'usual levels' of support from family, friends, work, school, day care services, homecare and community services. The purpose of this study was to examine the impact of the COVID-19 pandemic on family carers, their employment and care-giving responsibilities, through the lens of the Conservation of Resources (COR) theory (Hobfoll, 1989). Adopting a qualitative research approach, 16 family carers (14 females, 2 males) who were in employment prior to the onset of or during the pandemic, participated in an in-depth, semi-structured telephone or online video interview between June and September 2020. Interviews lasted between 45 and 100 min, were audio-recorded and transcribed verbatim. A thematic analysis of the interview data identified four main themes: colliding worlds; navigating unchartered waters alone; opportunity despite adversity and the relentless unknowing. Findings indicate that the onset of the pandemic resulted in the sudden loss of valued resources, which disrupted routines and caused care and work life domains to become intrinsically intertwined. Consistent with the main principles of the COR theory, adapting and transitioning to different ways of working and caring with depleted resources and supports, generated considerable stress for family carers and impacted their well-being. The implications for employers, healthcare providers, policy makers and other key stakeholders are considered, to enable family carers to successfully reconcile work with care and protect their well-being, as the pandemic continues to unfold and in the event of future societal crises.

COVID-19 IDD: A global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers.

Background: This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on individuals who have intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 16 countries worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin's Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

The invisible workforce during the COVID-19 pandemic: Family carers at the frontline.

This is an open letter to acknowledge the essential and increasingly challenging role unpaid family carers are playing in the COVID-19 pandemic. The letter is written by members of the CAREWELL team, a HRB-funded project that aims to promote health and self-care behaviours among working family carers. Family carers provide care to family and friends in the community who need support due to old-age, disability and chronic illness. In many cases, family carers are supporting those who are considered most at risk in this pandemic meaning carers must reduce their own risk of infection in order to protect their dependent family members. The temporary reduction of some home care services, as well as school and creche closures, means that family carers are providing increased levels of care with little or no support. At a time when both worlds of work and care have been dramatically transformed, we wish to shed light on those who are currently balancing paid employment with a family caregiving role. We argue that there is much to be learned from the recent work restrictions that could benefit employees, including working family carers, beyond this pandemic. We also wish to build on the potential positives of a transformed society and encourage policy makers and employers to focus on what is currently being implemented, and to identify which measures could be used to create a bedrock of policies and practices that would offer robust and effective support to family carers. It is hoped that family carers will receive greater recognition for the significant role they play in society, providing essential care and alleviating the strain on health and social care systems, both during and post the COVID-19 pandemic.