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1.
BMC Public Health ; 23(1): 653, 2023 04 05.
Article in English | MEDLINE | ID: covidwho-2262121

ABSTRACT

BACKGROUND: Social distancing restrictions to manage the COVID-19 pandemic were put in place from March 2020 in the United Kingdom (UK), with those classed as "highly clinically vulnerable" advised to shield entirely and remain at home. However, personal risk perception has been shown to comprise of various elements beyond those outlined in the national pandemic guidance. It is unclear whether those deemed COVID-19 vulnerable identified as high-risk to COVID-19 and thus complied with the relevant advice. The aim of this research is to explore the perception of risk in catching and spreading COVID-19, amongst individuals from individual households, and vulnerable groups in a region of the UK. METHODS: Two individual, semi-structured interviews were conducted, four-weeks apart, with adults living in households in the Liverpool City Region. At the follow-up interview, participants were given the option of using photo-elicitation to guide the discussion. Reflexive thematic analysis was employed to conceptualise themes. The qualitative analysis was underpinned with symbolic interactionism. RESULTS: Twenty-seven participants (13:14 males:females, and 20 with a vulnerable risk factor to COVID-19) completed a baseline interview, and 15 of these completed a follow-up interview four-weeks later. Following thematic analysis, two overarching themes were conceptualised, with subthemes discussed: theme 1) Confusion and trust in the risk prevention guidance; and theme 2) Navigating risk: compliance and non-compliance with public health guidance. CONCLUSION: Participants developed their own understanding of COVID-19 risk perception through personal experience and comparison with others around them, irrespective of vulnerability status. COVID-19 guidance was not complied with as intended by the government, and at times even rejected due to lack of trust. The format in which future pandemic guidance is conveyed must be carefully considered, and take into account individuals' experiences that may lead to non-compliance. The findings from our study can inform future public health policy and interventions for COVID-19 and future pandemics.


Subject(s)
COVID-19 , Pandemics , Adult , Female , Male , Humans , England , United Kingdom , Perception
2.
Int Psychogeriatr ; : 1-10, 2022 Jan 18.
Article in English | MEDLINE | ID: covidwho-2260611

ABSTRACT

OBJECTIVES: To explore and compare the experiences of care home visits during the pandemic in the UK and the Netherlands. DESIGN: Qualitative semi-structured interview studies. SETTING AND PARTICIPANTS: Family carers of relatives residing in care homes in the UK and the Netherlands were interviewed remotely. METHODS: Family carers were asked about their experiences of care home visits during the pandemic, and specifically in the Netherlands after care homes had reopened. Transcripts were analyzed in each country separately in the native language using thematic analysis, before discussing findings at multiple analysis meetings. RESULTS: Across 125 interviews, we developed four themes: (1) different types of contact during lockdown; (2) deterioration of resident health and well-being; (3) emotional distress of both visitors and residents; and (4) compliance to guidelines and regulations. Visiting in both the UK and the Netherlands was beneficial, if possible in the UK, yet was characterized by alternative forms of face-to-face visits which was emotionally distressing for many family carers and residents. In the Netherlands, government guidance did enable early care home visitation, while the UK was lacking any guidance leading to care homes implementing restrictions differently. CONCLUSIONS AND IMPLICATIONS: Early and clear guidance, as well as communication, is required in future pandemics, and in this ongoing pandemic, to enable care home visits between residents and loved ones. It is important to take learnings from this global pandemic to reimagine long-term care, highlighting the value of socializing for care home residents.

3.
Aging Ment Health ; : 1-9, 2022 Mar 25.
Article in English | MEDLINE | ID: covidwho-2254900

ABSTRACT

OBJECTIVES: The COVID-19 pandemic and public health measures caused serious consequences for several population cohorts, including people with dementia in care homes and their families. The aim of this study was to explore the impact of COVID-19 on care home residents with dementia as experienced by family carers in Italy. Specifically, strategies implemented to overcome the pandemic's constraints, their influence upon care, and consequences for everyday life of residents with dementia and carers were investigated. METHODS: Semi-structured interviews explored participants' experiences of the pandemic, its restrictions and the services' status during lockdown. Transcripts were analysed via thematic analysis. RESULTS: 26 family carers were interviewed. Three themes emerged: (1) COVID-19 restrictions negatively affected both residents with dementia and family carers, (2) Changing policies in care homes during COVID-19, and (3) Technology use in care homes during COVID-19. COVID-19 restrictions severely affected care home residents with dementia, disrupted their daily living, and accelerated their cognitive decline. Consequently carers' emotional burdens increased. Care home response strategies (safe visiting and digital solutions) were critical, though they were not enough to compensate for the lack of close in-person contacts. CONCLUSIONS: Mixed evidence emerged about the feasibility of care home strategies and their associated benefits. To meet arising needs and possible future pandemic waves, there is a need for updated health strategies. These should prioritise a continuity of therapeutic activities and minimize negative effects on residents' quality of life, whilst incorporating feasible and accessible digital solutions to provide remote communication and psychological support for family carers.

4.
J R Soc Med ; 116(3): 97-112, 2023 03.
Article in English | MEDLINE | ID: covidwho-2240221

ABSTRACT

OBJECTIVES: To determine the prevalence of organ impairment in long COVID patients at 6 and 12 months after initial symptoms and to explore links to clinical presentation. DESIGN: Prospective cohort study. PARTICIPANTS: Individuals. METHODS: In individuals recovered from acute COVID-19, we assessed symptoms, health status, and multi-organ tissue characterisation and function. SETTING: Two non-acute healthcare settings (Oxford and London). Physiological and biochemical investigations were performed at baseline on all individuals, and those with organ impairment were reassessed. MAIN OUTCOME MEASURES: Primary outcome was prevalence of single- and multi-organ impairment at 6 and 12 months post COVID-19. RESULTS: A total of 536 individuals (mean age 45 years, 73% female, 89% white, 32% healthcare workers, 13% acute COVID-19 hospitalisation) completed baseline assessment (median: 6 months post COVID-19); 331 (62%) with organ impairment or incidental findings had follow-up, with reduced symptom burden from baseline (median number of symptoms 10 and 3, at 6 and 12 months, respectively). Extreme breathlessness (38% and 30%), cognitive dysfunction (48% and 38%) and poor health-related quality of life (EQ-5D-5L < 0.7; 57% and 45%) were common at 6 and 12 months, and associated with female gender, younger age and single-organ impairment. Single- and multi-organ impairment were present in 69% and 23% at baseline, persisting in 59% and 27% at follow-up, respectively. CONCLUSIONS: Organ impairment persisted in 59% of 331 individuals followed up at 1 year post COVID-19, with implications for symptoms, quality of life and longer-term health, signalling the need for prevention and integrated care of long COVID.Trial Registration: ClinicalTrials.gov Identifier: NCT04369807.


Subject(s)
COVID-19 , Humans , Female , Middle Aged , Male , COVID-19/epidemiology , SARS-CoV-2 , Post-Acute COVID-19 Syndrome , Prospective Studies , Quality of Life , Longitudinal Studies
5.
Health Expect ; 2022 Nov 06.
Article in English | MEDLINE | ID: covidwho-2232715

ABSTRACT

INTRODUCTION: Covid-19 expanded the use of remote working to engage with public contributors in health and social care research. These changes have the potential to limit the ability to participate in patient and public involvement and engagement (PPIE) for some public contributors. It is therefore important to understand public contributors' preferences, so that remote working can be organized in an optimal way to encourage rather than discourage participation. METHODS: We use an economic preference elicitation tool, a discrete choice experiment (DCE), via an online survey, to estimate public contributors' preferences for and trade-offs between different features of remote meetings. The features were informed by previous research to include aspects of remote meetings that were relevant to public contributors and amenable to change by PPIE organizers. RESULTS: We found that public contributors are more likely to participate in a PPIE project involving remote meetings if they are given feedback about participation; allowed to switch their camera off during meetings and step away if/when needed; were under 2.5 h long; organized during working hours, and are chaired by a moderator who can ensure that everyone contributes. Different combinations of these features can cause estimated project participation to range from 23% to 94%. When planning PPIE and engaging public contributors, we suggest that resources are focused on training moderators and ensuring public contributors receive meeting feedback. DISCUSSION AND CONCLUSION: Project resources should be allocated to maximize project participation. We provide recommendations for those who work in public involvement and organize meetings on how resources, such as time and financial support, should be allocated. These are based on the preferences of existing public contributors who have been involved in health and social care research. PATIENT OR PUBLIC CONTRIBUTION: We had a public contributor (Naheed Tahir) as a funded coapplicant on the UKRI ESRC application and involved members of the North West Coast Applied Research Collaboration (NWC ARC) Public Advisor Forum at every stage of the project. The survey design was informed from three focus groups held with NWC ARC public contributors. The survey was further edited and improved based on the results of six one-to-one meetings with public contributors.

6.
PLoS One ; 17(11): e0277936, 2022.
Article in English | MEDLINE | ID: covidwho-2140676

ABSTRACT

INTRODUCTION: As mortality rates from COVID-19 disease fall, the high prevalence of long-term sequelae (Long COVID) is becoming increasingly widespread, challenging healthcare systems globally. Traditional pathways of care for Long Term Conditions (LTCs) have tended to be managed by disease-specific specialties, an approach that has been ineffective in delivering care for patients with multi-morbidity. The multi-system nature of Long COVID and its impact on physical and psychological health demands a more effective model of holistic, integrated care. The evolution of integrated care systems (ICSs) in the UK presents an important opportunity to explore areas of mutual benefit to LTC, multi-morbidity and Long COVID care. There may be benefits in comparing and contrasting ICPs for Long COVID with ICPs for other LTCs. METHODS AND ANALYSIS: This study aims to evaluate health services requirements for ICPs for Long COVID and their applicability to other LTCs including multi-morbidity and the overlap with medically not yet explained symptoms (MNYES). The study will follow a Delphi design and involve an expert panel of stakeholders including people with lived experience, as well as clinicians with expertise in Long COVID and other LTCs. Study processes will include expert panel and moderator panel meetings, surveys, and interviews. The Delphi process is part of the overall STIMULATE-ICP programme, aimed at improving integrated care for people with Long COVID. ETHICS AND DISSEMINATION: Ethical approval for this Delphi study has been obtained (Research Governance Board of the University of York) as have approvals for the other STIMULATE-ICP studies. Study outcomes are likely to inform policy for ICPs across LTCs. Results will be disseminated through scientific publication, conference presentation and communications with patients and stakeholders involved in care of other LTCs and Long COVID. REGISTRATION: Researchregistry: https://www.researchregistry.com/browse-the-registry#home/registrationdetails/6246bfeeeaaed6001f08dadc/.


Subject(s)
COVID-19 , Delivery of Health Care, Integrated , Humans , COVID-19/epidemiology , Critical Pathways , Mental Health , Post-Acute COVID-19 Syndrome
7.
Res Involv Engagem ; 8(1): 58, 2022 Nov 04.
Article in English | MEDLINE | ID: covidwho-2109033

ABSTRACT

BACKGROUND: This paper considers remote working in patient public involvement and engagement (PPIE) in health and social care research. With the advent of the Covid-19 pandemic and associated lock-down measures in the UK (from March 2020), PPIE activities switched to using remote methods (e.g., online meetings), to undertake involvement. Our study sought to understand the barriers to and facilitators for remote working in PPIE by exploring public contributors' and PPIE professionals' (people employed by organisations to facilitate and organise PPIE), experiences of working remotely, using online and digital technologies. A particular focus of our project was to consider how the 'digital divide' might negatively impact on diversity and inclusion in PPIE in health and social care research. METHODS: We used a mixed method approach: online surveys with public contributors involved in health and social care research, online surveys with public involvement professionals, and qualitative interviews with public contributors. We co-produced the study with public contributors from its inception, design, subsequent data analysis and writing outputs, to embed public involvement throughout the study. RESULTS: We had 244 respondents to the public contributor survey and 65 for the public involvement professionals (PIPs) survey and conducted 22 qualitative interviews. Our results suggest public contributors adapted well to working remotely and they were very positive about the experience. For many, their PPIE activities increased in amount and variety, and they had learnt new skills. There were both benefits and drawbacks to working remotely. Due to ongoing Covid restrictions during the research project, we were unable to include people who did not have access to digital tools and our findings have to be interpreted in this light. CONCLUSION: Participants generally favoured a mixture of face-to-face and remote working. We suggest the following good practice recommendations for remote working in PPIE: the importance of a good moderator and/or chair to ensure everyone can participate fully; account for individual needs of public contributors when planning meetings; provide a small expenses payment alongside public contributor fees to cover phone/electricity or WiFi charges; and continue the individual support that was often offered to public contributors during the pandemic.


This paper looks at remote working in patient public involvement and engagement (PPIE) in health and social care research. When the Covid-19 pandemic began and the UK went into lock-down in March 2020, PPIE activities began to use remote working methods, such as Zoom or Teams online meetings. We co-developed a study to understand the experiences of both public contributors and PPIE professionals, those who are employed to organise PPIE, of working remotely. We were particularly interested in how remote working might affect diversity and inclusion in PPIE in health and social care research. We ran online surveys for public contributors and public involvement professionals and conducted semi-structured interviews with public contributors. We co-produced the study with public contributors to embed public involvement throughout the study. We had 244 respondents to the public contributor survey, 65 for the public involvement professionals survey and conducted 22 qualitative interviews. Due to ongoing Covid restrictions during the research project we could not include people who did not have access to digital tools, and this is a limitation of our project. We found that public contributors generally liked working remotely and, for many, their PPIE activities increased. There were both benefits and drawbacks to working remotely. From our findings, we have made a number of suggestions for how to run remote meetings in PPIE and what to prioritise based on the areas public contributors thought were important (such as one-to-one support).

8.
BMC Health Serv Res ; 22(1): 253, 2022 Feb 24.
Article in English | MEDLINE | ID: covidwho-2038734

ABSTRACT

BACKGROUND: Older adults in Colombia have seen a number of stressful life events - including the Colombian armed conflict, forced misplacement and recently COVID-19. These events likely have had and are having a substantial impact on people's mental health and well-being, whilst mental health care provision in Colombia is not sufficient and often access is limited and unaffordable. Therefore, the aim of this study is to understand the impact of stressful life events on the mental health of older adults living in Colombia, and co-produce, pilot, and evaluate a community-based mental health intervention in Turbo. METHODS: This 3-year international mixed-methods study comprises of three phases: Phase I will explore the impact of stressful life events on the mental health of older adults living in Colombia, and their mental health needs, via quantitative needs assessments and qualitative interviews and focus groups; Phase II will involve synthesising the findings from Phase I as well as conducting a systematic review and qualitative interviews with experts into implementing mental health interventions in LMICs to co-produce a community-based mental health intervention with older adults and local community group leaders and care providers; Phase III will involve the piloting and evaluation of the mental health intervention via quantitative and qualitative assessments. Co-production and public involvement underpin each element of this project. DISCUSSION: Appropriate mental health care is as important as physical health care, but this study also looks at how we might integrate these findings into community-level public health initiatives for application both within Colombia and more widely in both LMICs and more developed countries. This study protocol will act as a guide for the development and adaptation of psychosocial mental health interventions in different cultures and contexts.


Subject(s)
Health Services Needs and Demand , Mental Health Services , Mental Health , Stress, Psychological , Aged , Armed Conflicts/psychology , COVID-19/psychology , Colombia/epidemiology , Focus Groups , Humans , Systematic Reviews as Topic
9.
Int J Geriatr Psychiatry ; 37(9)2022 09.
Article in English | MEDLINE | ID: covidwho-2013502

ABSTRACT

OBJECTIVES: Considering the adverse outcomes of COVID-19, it is essential to provide adequate support and care for people with dementia and informal carers. Technology can reduce the distress associated with social distancing rules and the decreased access to in-person services. This study aimed to explore the use of technology and its perceived effects across different settings and countries. METHODS: The sample was composed of 127 informal carers and 15 people with dementia from the UK, Italy, Australia and Poland. Semi-structured interviews explored participants' experiences of using technology and their perceived effects. Transcripts were analysed by researchers in each country using an inductive approach. RESULTS: Three overarching themes were developed: (1) Technology kept us alive during COVID-19; (2) Remote care was anything but easy; (3) Perceived technology limitations. Many similarities emerged between countries supporting the role of technology for being socially engaged, having a routine, and staying active. However, the benefits of technology for health and psychosocial care were more limited. Across countries, barriers to the access and use of technology included lack of digital literacy, dementia severity, and lack of appropriate digital environments. Help and supervision from carers were also necessary and sometimes perceived as an additional burden. CONCLUSIONS: Technology can effectively reduce the shrinking world that may be amplified by the pandemic, thus preserving people with dementia's social skills and maintaining family connections. However, for more extensive and well-adapted use of technology in dementia care, actions should be taken to overcome the barriers to the access and use of technology by older and vulnerable people globally.


Subject(s)
COVID-19 , Dementia , Caregivers/psychology , Dementia/psychology , Humans , Italy , Technology
10.
PLoS One ; 17(8): e0271978, 2022.
Article in English | MEDLINE | ID: covidwho-1993481

ABSTRACT

INTRODUCTION: Individuals with Long Covid represent a new and growing patient population. In England, fewer than 90 Long Covid clinics deliver assessment and treatment informed by NICE guidelines. However, a paucity of clinical trials or longitudinal cohort studies means that the epidemiology, clinical trajectory, healthcare utilisation and effectiveness of current Long Covid care are poorly documented, and that neither evidence-based treatments nor rehabilitation strategies exist. In addition, and in part due to pre-pandemic health inequalities, access to referral and care varies, and patient experience of the Long Covid care pathways can be poor. In a mixed methods study, we therefore aim to: (1) describe the usual healthcare, outcomes and resource utilisation of individuals with Long Covid; (2) assess the extent of inequalities in access to Long Covid care, and specifically to understand Long Covid patients' experiences of stigma and discrimination. METHODS AND ANALYSIS: A mixed methods study will address our aims. Qualitative data collection from patients and health professionals will be achieved through surveys, interviews and focus group discussions, to understand their experience and document the function of clinics. A patient cohort study will provide an understanding of outcomes and costs of care. Accessible data will be further analysed to understand the nature of Long Covid, and the care received. ETHICS AND DISSEMINATION: Ethical approval was obtained from South Central-Berkshire Research Ethics Committee (reference 303958). The dissemination plan will be decided by the patient and public involvement and engagement (PPIE) group members and study Co-Is, but will target 1) policy makers, and those responsible for commissioning and delivering Long Covid services, 2) patients and the public, and 3) academics.


Subject(s)
COVID-19 , Delivery of Health Care, Integrated , COVID-19/complications , COVID-19/epidemiology , COVID-19/therapy , Critical Pathways , Humans , Longitudinal Studies , Post-Acute COVID-19 Syndrome
11.
BMC Palliat Care ; 21(1): 91, 2022 Jun 01.
Article in English | MEDLINE | ID: covidwho-1951173

ABSTRACT

PURPOSE: To report the experiences of End of Life (EoL) care in UK care homes during the COVID-19 pandemic. METHODS: UK care home staff and family carers of residents in care home took part in remote, semi-structured interviews from October to November 2020, with 20 participants followed-up in March 2021. Interviews were conducted via telephone or online platforms and qualitatively analysed using inductive thematic analysis. RESULTS: Forty-two participants (26 family carers and 16 care home staff) were included in a wider qualitative study exploring the impact on dementia care homes during the pandemic. Of these, 11 family carers and 9 care home staff participated in a follow-up interview. Following descriptive thematic analysis, three central themes concerning EoL care during the pandemic specifically, were conceptualised and redefined through research team discussions: 1) Wasting or losing time; 2) Maintaining control, plans and routine; and 3) Coping with loss and lack of support. Lack of suitable, meaningful visits with people with dementia in care homes resulted in negative feelings of guilt and abandonment with both family carers and care home staff. Where families experienced positive EoL visits, these appeared to breach public health restrictions at that time. CONCLUSION: It is recommended that care homes receive clear guidance from the government offering equitable contact with relatives at EoL to all family members, to support their grieving and avoid subsequent negative impacts to emotional wellbeing.


Subject(s)
COVID-19 , Dementia , Terminal Care , Dementia/psychology , Dementia/therapy , Humans , Pandemics , United Kingdom
12.
PLoS One ; 17(7): e0266153, 2022.
Article in English | MEDLINE | ID: covidwho-1933217

ABSTRACT

BACKGROUND AND AIM: Despite the significant mental health challenges the COVID-19 pandemic and its associated government measures have presented, research has shown that the majority of people have adapted and coped well. The aim of this study was i) to determine the proportion of people with mental stability and volatility during the pandemic in a North West England city region sample and ii) to establish group differences in psychosocial variables. Mental stability and volatility refer to the extent to which individuals reported change in levels of common mental health symptoms over the course of 12 weeks. No change in mental health over the 12 weeks reflected mental stability whilst change in mental health reflected mental volatility. METHOD: A two-wave-online survey (N = 163) was used to explore the psychological and social impact of the pandemic on relatively disadvantaged neighbourhoods within the region. The data collected represents 12 weeks of individual pandemic experience between mid-June and mid-December 2020. A three-level composite common mental health change variable was created combining self-reported anxiety and depression to group stable, volatile, and very volatile individuals in terms of the changeability of their mental health. Kruskal-Wallis with post-hoc tests were used to determine how people with mental stability and volatility differed on factors categorised within an ecological framework of resilience (individual, community, societal, and COVID-19 specific). RESULTS: Individuals categorised as 'stable' in terms of mental health symptoms (63.6%) had better mental and physical health; were more tolerant of uncertainty; and reported higher levels of resilience and wellbeing compared to 'very volatile' people (19.8%). These individuals also reported feeling less socially isolated, experienced a greater sense of belonging to their community which was more likely to fulfil their needs, and were more likely to have access to green space nearby for their recommended daily exercise. 'Stable' individuals did not report worrying any more during the pandemic than usual and tolerated uncertainty better compared to those in the 'volatile' group. IMPLICATIONS: The majority of participants in this sample were mentally stable and coping well with the challenges presented by the pandemic. The resilience of these individuals was related to key place-based factors such as a strong sense of community and useable local assets. The data showcase the role of place-based social determinants in supporting resilience and thereby highlight key preventative measures for public mental health during times of international crisis.


Subject(s)
COVID-19 , Anxiety/epidemiology , COVID-19/epidemiology , Humans , Mental Health , Pandemics , Surveys and Questionnaires
13.
Healthcare (Basel) ; 9(12)2021 Dec 03.
Article in English | MEDLINE | ID: covidwho-1896838

ABSTRACT

Older people with dementia are particularly at risk of COVID-19; however, relatively little is known about the indirect impact of the pandemic on the lives of those living with, and/or caring for someone with, dementia. The aim of this study was to investigate the experiences of people with dementia and informal carers during the closure of available social and medical services in Poland during the COVID-19 pandemic. A qualitative thematic analysis of semi-structured interviews with people with dementia (n = 5) and informal carers (n = 21) was performed between June and August 2020 after the first wave of COVID-19 in Poland. Three overarching themes were identified: (1) care re-organization; (2) psychological responses; (3) emerging needs. The factor underlying all these elements was reliance on other people. Social support and engagement are vital to the ongoing health and well-being of people living with dementia and their informal carers. Services need to be strengthened to provide ongoing provision to those living with dementia to reach pre-pandemic levels, if not better. Within the post-pandemic environment, people with dementia and their informal carers need reassurance that they can rely on external institutional and social support able to meet their needs.

14.
J Fam Nurs ; 28(3): 205-218, 2022 08.
Article in English | MEDLINE | ID: covidwho-1883446

ABSTRACT

The aim of this study was to explore how formal social support changed after implementation of the COVID-19 public health measures and how these restrictions affected people living with dementia and their informal carers in Australia. Sixteen informal carers and two people living with dementia were interviewed between August and November 2020. Participants were asked about their experiences of the pandemic and the impact that the restrictions had on their lives and care. Thematic analysis identified four overarching themes describing (a) prepandemic limitations of the aged care system, (b) the aged care system's response to the COVID-19 restrictions, (c) changes affecting informal carers, and (d) the challenges faced by people living with dementia. The findings highlighted the challenges faced by the Australian aged care system before the pandemic and the additional burden placed on informal carers who supported people living with dementia across residential and home settings during the pandemic.


Subject(s)
COVID-19 , Dementia , Aged , Australia , Caregivers , Humans , Qualitative Research
15.
BMJ Open ; 11(1): e045889, 2021 01 17.
Article in English | MEDLINE | ID: covidwho-1832434

ABSTRACT

BACKGROUND: The COVID-19 pandemic has had a major impact on delivery of social support services. This might be expected to particularly affect older adults and people living with dementia (PLWD), and to reduce their well-being. AIMS: To explore how social support service use by older adults, carers and PLWD, and their mental well-being changed over the first 3 months since the pandemic outbreak. METHODS: Unpaid dementia carers, PLWD and older adults took part in a longitudinal online or telephone survey collected between April and May 2020, and at two subsequent timepoints 6 and 12 weeks after baseline. Participants were asked about their social support service usage in a typical week prior to the pandemic (at baseline), and in the past week at each of the three timepoints. They also completed measures of levels of depression, anxiety and mental well-being. RESULTS: 377 participants had complete data at all three timepoints. Social support service usage dropped shortly after lockdown measures were imposed at timepoint 1 (T1), to then increase again by T3. The access to paid care was least affected by COVID-19. Cases of anxiety dropped significantly across the study period, while cases of depression rose. Well-being increased significantly for older adults and PLWD from T1 to T3. CONCLUSIONS: Access to social support services has been significantly affected by the pandemic, which is starting to recover slowly. With mental well-being differently affected across groups, support needs to be put in place to maintain better well-being across those vulnerable groups during the ongoing pandemic.


Subject(s)
COVID-19/psychology , Caregivers/psychology , Dementia/psychology , Health Facility Closure , Social Work , Adult , Aged , Aged, 80 and over , Anxiety/epidemiology , COVID-19/prevention & control , Depression/epidemiology , Female , Humans , Longitudinal Studies , Male , Mental Health , Middle Aged , Social Support , United Kingdom/epidemiology , Young Adult
16.
Health Soc Care Community ; 30(5): e3128-e3137, 2022 09.
Article in English | MEDLINE | ID: covidwho-1707849

ABSTRACT

The COVID-19 pandemic has significantly limited access to health and social care support systems for people with dementia and their carers, compounding the severe social restrictions. The aim of this study was to investigate the experiences of COVID-19 among community-dwelling people with dementia and their informal carers in Italy. Specifically, we focused on access to community-based services and adopted solutions to provide support and care during exceptional times. Informal carers, caring for someone with dementia and attending community-based services in Italy, participated in remote semi-structured interviews between October and November 2020. Participants were asked about the effects of social isolation and closure of in-person services on their daily lives as well as the challenges of dementia care. Transcripts were analysed using inductive thematic analysis. 22 informal carers were interviewed. Three themes emerged: (1) Disruptions to people with dementia's lives and health; (2) COVID-19 as an additional stressor for carers; and (3) New ways of caring for people with dementia during COVID-19. Face-to-face social care and social support services were suddenly interrupted and restrictions on social distancing were introduced, thus leading to people with dementia's impaired health and increased behavioural and psychological symptoms. Not only the amount but also the intensity of care increased, with no chance of respite for informal carers. Overall remote activities provided participants with emotional and social benefits, while allowing the continuity of relationships with services staff and users and of care. However, according to carers, a combination of virtual and face-to-face activities could better counterbalance the multiple adverse outcomes of COVID-19. Public health measures should be designed carefully to consider the safety needs and the physical, psychological and social needs of people with dementia. Within a holistic care approach, social care services need to be enabled better to guarantee high-quality care even during pandemic times.


Subject(s)
COVID-19 , Dementia , COVID-19/epidemiology , Caregivers/psychology , Community Health Services , Dementia/epidemiology , Dementia/psychology , Dementia/therapy , Humans , Pandemics
17.
J Adv Nurs ; 78(7): 2191-2202, 2022 Jul.
Article in English | MEDLINE | ID: covidwho-1706390

ABSTRACT

AIMS: The aim of this study was to explore the impact of the pandemic on the emotional and mental well-being of family carers, care home staff and residents, in light of changing restrictions, increased testing and vaccination rollout in the UK. DESIGN: Longitudinal, qualitative semi-structured interview study. METHODS: Remote semi-structured interviews were conducted with family carers of care home residents with dementia and care home staff from different care homes across the UK. Baseline and follow-up interviews were conducted in October/November 2020 and March 2021, respectively. Data were analysed using inductive thematic analysis involving members of the public with caring experiences. RESULTS: In all, 42 family carers and care home staff participated at baseline, with 20 family carers and staff followed up. We identified four themes: (1) Developing anger and frustration; (2) Impact on relationships; (3) Stress and burnout; and (4) Behavioural changes, and perceived impact on residents. The mental health of everyone involved, including family carers, care home staff and residents, has been negatively affected, and relationships between family carers and staff have been severely strained. There was a general lack of adequate mental health support, with little relief. CONCLUSIONS: The pandemic has had a detrimental impact on the lives of those surrounding care homes-from residents and staff to family carers. Consideration should be given on how to best support the mental health needs of all three groups, by providing adequate easily accessible mental health care for all. This should also focus on rebuilding the relationships between family carers and care home staff. IMPACT: This is the first paper to highlight the effects of the long-lasting and miscommunicated restrictions on residents, carers and care home staff, and highlight the urgent need for continued mental health support.


Subject(s)
Family , Nursing Homes , Burnout, Psychological , Caregivers/psychology , Family/psychology , Guilt , Humans , Mental Health , United Kingdom
18.
BMC Geriatr ; 22(1): 129, 2022 02 15.
Article in English | MEDLINE | ID: covidwho-1690962

ABSTRACT

BACKGROUND: The pandemic has significantly affected care homes' residents and families through the national visiting restrictions. However, less is known on the impact these changes have had on the care home workforce. The aim of this research was to explore the impact of COVID-19 on the working practices of care home staff, caring for people living with dementia. METHODS: Remote qualitative, semi-structured interviews were conducted with care home staff caring for people living with dementia (PLWD) in the UK. RESULTS: Participants were recruited to the larger programme of research via convenience sampling. Interviews were conducted via telephone or online platforms. This research employed inductive thematic analysis. Sixteen care home staff were included in this study. Three overarching themes were developed from the analysis that conveyed changes to the everyday working practices of the care home workforce and the impact such changes posed to staff wellbeing: (1) Practical implications of working in a care home during the COVID-19 pandemic; (2); Staff values and changes to the staff roles (3): Impact to the care home staff and concerns for the care sector. CONCLUSIONS: The COVID-19 pandemic has significantly disrupted the daily working practices of care home staff, with staff forced to adopt additional roles on top of increased workloads to compensate for the loss of external agencies and support. Support and guidance must be offered urgently to inform care home staff on how to best adapt to their new working practices, ensuring that they are adequately trained.


Subject(s)
COVID-19 , Humans , Pandemics , Qualitative Research , SARS-CoV-2
19.
BMC Geriatr ; 22(1): 116, 2022 02 11.
Article in English | MEDLINE | ID: covidwho-1677487

ABSTRACT

BACKGROUND: Emerging evidence shows an impact of the COVID-19 pandemic on people living with dementia and informal carers, without any evidence-based global comparison to date. The aim of this international study was to explore and compare the perceived impact of COVID-19 and associated public health restrictions on the lives of people living with dementia and informal carers and access to dementia care across five countries. METHODS: Informal carers and people living with dementia who were residing in the community in the UK, Australia, Italy, India, and Poland were interviewed remotely between April and December 2020. Participants were asked about their experiences of the pandemic and how restrictions have impacted on their lives and care. Transcripts were analysed by researchers in each country using inductive thematic analysis. RESULTS: Fifteen people living with dementia and 111 informal carers participated across the five countries. Four themes emerged: (1) Limited access and support; (2) Technology and issues accessing remote support; (3) Emotional impact; and (4) Decline of cognitive and physical health reported by carers. Whilst variations were noted, the pandemic has indirectly affected people with dementia and carers across all five countries. The pandemic removed access to social support services and thus increased carer burden. Remote services were not always provided and were very limited in benefit and usability for those with dementia. As a result, carers appeared to notice reduced cognitive and physical health in people with dementia. Particular differences were noted between India and Poland vs. the UK, Italy, and Australia, with less impact on care provision in the former due to limited uptake of support services pre-pandemic based on cultural settings. CONCLUSIONS: The pandemic has amplified dementia as a global public health problem, and people affected by the condition need support to better access vital support services to live well.


Subject(s)
COVID-19 , Dementia , Caregivers , Dementia/diagnosis , Dementia/epidemiology , Dementia/therapy , Humans , Pandemics , SARS-CoV-2
20.
Age Ageing ; 51(1)2022 01 06.
Article in English | MEDLINE | ID: covidwho-1545895

ABSTRACT

BACKGROUND: vaccination uptake in the UK and increased care home testing are likely affecting care home visitation. With scant scientific evidence to date, the aim of this longitudinal qualitative study was to explore the impact of both (vaccination and testing) on the conduct and experiences of care home visits. METHODS: family carers of care home residents with dementia and care home staff from across the UK took part in baseline (October/November 2020) and follow-up interviews (March 2021). Public advisers were involved in all elements of the research. Data were analysed using thematic analysis. RESULTS: across 62 baseline and follow-up interviews with family carers (n = 26; 11) and care home staff (n = 16; 9), five core themes were developed: delayed and inconsistent offers of face-to-face visits; procedures and facilitation of visits; variable uptake of the COVID-19 vaccine; misinformation, education and free choice; frustration and anger among family carers. The variable uptake in staff, compared to family carers, was a key factor seemingly influencing visitation, with a lack of clear guidance leading care homes to implement infection control measures and visitation rights differently. CONCLUSIONS: we make five recommendations in this paper to enable improved care home visitation in the ongoing, and in future, pandemics. Visits need to be enabled and any changes to visiting rights must be used as a last resort, reviewed regularly in consultation with residents and carers and restored as soon as possible as a top priority, whilst more education needs to be provided surrounding vaccination for care home staff.


Subject(s)
COVID-19 , COVID-19 Vaccines , Humans , SARS-CoV-2 , United Kingdom/epidemiology , Vaccination
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