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Family carers of people with dementia have reported increased caring demands during the COVID-19 pandemic. The aim of this qualitative study is to explore seven family carers’ accounts of dementia caregiving one year into the COVID-19 pandemic in England in relation to carer resilience. Themes describe the complex challenges of caring during the pandemic, with interviewees burned out and ‘caring beyond capacity’ due to unmet needs within the caring role, therein highlighting the limitations of building individual resilience only. Timely practical support for carers is essential to protect their well-being and to ward against the potential consequences of carer burnout.
Across Western nations, ‘ageing in place’ policies rely on having a sufficient and skilled aged care workforce. In Australia, due to the impact of successive policy reforms, this workforce including the sector that provides community-based services has declined in number and skills. At the same time the need to upskill and sustain this workforce has intensified as the frailty and health needs of consumers have increased. This paper reports on an integrative literature review undertaken during 2021 to describe workforce needs and peer reviewed reports of programs instituted in aged care settings that aimed to address these needs.
The review sought to examine programs implemented in both long-term and community care settings and to draw from these elements that may be utilised in future program design across the sector. It focussed primarily on workforce deficits in the community aged care sector and on the capacity of rurally-based services to meet and respond to growing consumer demand. The findings emphasise current workforce deficits while they also reveal a paucity of peer-reviewed reports of implemented programs across the sector as a whole. Nevertheless, the few programs examined in this review provide examples of the capacity and willingness of workers and providers to trial measures that aim to increase the recruitment, retention, skill and job-satisfaction of direct care workers. We propose that the key elements of the programs identified in this paper provide the foundation for the development of strategically designed programs that address particular workforce needs such as those shaped by rural contexts.
This study represents the experiences of informal carers of people with dementia concerning periods of transition into formal care. Retrospective interviews with 18 carers identified the key narratives: ‘This is why I had to’, ‘They said I need to’ and ‘It was a last resort’. These indicate a sense of carers’ responsibility in decision making and the undesirable assumptions around the move. However, the narrative of ‘I made the right decision’ was common after transition. Findings represent the nuanced carer experience around transitions, providing insight into the experiences of families living with dementia and informing future care planning.
Spinal cord injury paraplegia is a significant health problem in Sri Lanka. This study explores the psychological experiences of family carers of people with such a condition. A descriptive phenomenological study was conducted with 17 parent, sibling, spouse and adult carers. Thematic analysis revealed four themes related to: carer emotions regarding the caring process; feelings related to the family member’s condition; beliefs beyond the physical world; and behaviour changes due to psychological distress. The findings will help develop interventions for the psychological needs of Sri Lankan carers and may provide insight into the experiences of similar Asian communities living globally.
During the pandemic, governments had to communicate complex scientific and epidemiological concepts in such a way that they could be understood and accepted by the population, and result in behavioural changes that limited or stopped the spread of the virus. The challenge of communicating the risks of COVID-19 was affected by the ways in which it was initially framed. In those countries in which it was framed as a SARS-like disease, there was no need to change and adjust the public health message. From the start, the new virus was presented as a major danger and one that required significant changes in behaviour. In Taiwan, Japan and New Zealand, there was a clear and consistent message engendering public trust. In countries that initially framed COVID-19 as flu-like, such as the UK and US, there were major shifts in messaging, especially in the early stages of the pandemic when it became evident that there was community transmission, that hospital admissions were taking place and deaths were rising rapidly. In some countries, the messaging was further undermined by tensions between populist politicians and public health experts. This tended to undermine trust in public health messaging.
The COVID-19 pandemic was inextricably linked to risk. The emergence of a new highly infectious and lethal virus from Wuhan in late 2019 created uncertainty, and policy makers sought to assess the risk it presented. The concept of risk shaped the experience of the pandemic in different ways. With initially limited evidence available, the ways in which policy makers framed the new disease shaped the responses they adopted, whether zero-COVID versus wait and see. Once community transmission was established, measures to limit harm were shaped by risk categorisation and risk work in hospitals. While policy makers claimed to be following the science in their decision making, risk issues were contested within scientific communities and outside, given the lack of consensus and transparency. Policy makers have argued that a proper inquiry cannot take place until the pandemic is over. This has not stopped inquiries being set up. In countries with high infection and death rates, such as the US, UK and Brazil, inquiries have blamed policy makers for failing to recognise the risks of SARS-CoV-2 and for failing to take and communicate timely action.
The development of different forms of media enables individuals to access a range of competing sources of information. Individuals have to decide which sources they trust. Social media can provide forums within which ‘networked publics’ can interact. While such forums can be open, interactive and egalitarian, they can also be dominated by individuals who accumulate a substantial following, so-called influencers. When such influencers are politicians, social media take on some of the characteristics of a social movement in which a charismatic leader communicates with his or her followers. In the US, Donald Trump used social media, especially Twitter, to create and connect with his supporters. Conspiracy theorists take some of the reasonable doubts about contemporary science and technology, extend them and weave them into theories that deny the benevolent motives of governments and experts or express the view that conventional therapies such as vaccination are harmful, for example. In seeking to refute conspiracy theories, government agencies seldom address the reasonable doubts raised about science and technology. During the pandemic, social media facilitated the spread of conspiracy theories. Individuals were cut off from their normal social networks and sources of reality, and as many experienced increased anxiety and uncertainty, pursuing conspiracies could be a satisfying pastime.
One of the key role of governments in modern democratic societies is to protect their citizens by identifying and mitigating the risks they are exposed to. To provide such protection, the government needs to draw on experts’ knowledge. In normal times, this process tends to take place behind closed doors and attracts relatively little attention. During the COVID-19 pandemic, however, experts took on a more prominent and public role. In making decisions that impacted on the lives of all citizens, politicians claimed to be ‘following the science’, and called on experts to legitimate these decisions by endorsing them in public, at televised briefings, for example. The relationship between science, policy and risk management in the pandemic was complex. The acceptance of scientific knowledge by policy makers and in the wider community was shaped by the social standing of the scientists and the extent to which their ‘knowledge’ fitted within pre-existing knowledge and perceptions. ‘Following the science’ implies that scientific knowledge provides an objective representation of the physical world and that rational action can be based on such action. Scientific knowledge can and is contested, and policy makers made political decisions about which scientists and institutions they will listen to.
Analysing risk is generally seen as a way of predicting and managing the future, but it can also be used to explain what went wrong in the past. When there is a major disaster with a large loss of life and/or an existential threat to society, then there is pressure to investigate. Inquiries provide a mechanism for investigating the causes of disasters, identifying why risk was poorly managed and attributing blame for failures. Inquiries are a way of neutralising criticism of failures to respond effectively to risk. By appointing independent authoritative experts to investigate their actions, agencies can acknowledge their failures and shortcomings, make amends to those harmed, and demonstrate a willingness to learn lessons and avoid making the same mistakes again. They can also redress reputational damage. While COVID-19 was still spreading round the globe, the actions and inactions of governments were already coming under scrutiny and becoming subject to inquiries, especially by legislatures in democratic countries that have a duty to oversee the executive. Political leaders were aware of such scrutiny, and responded by seeking to present their actions in the best possible light or by trying to deflect blame.
All societies need to manage the uncertainties of the future and account for the misfortunes of the past. In pre-modern societies, religious and supernatural beliefs provided the basis for prediction of the future and allocation of blame for misfortunes. In modern high-income countries with developed health-care systems, such beliefs have been (partially) replaced by the use of rationality, especially risk, making it possible for human actions to be based on reason and evidence. In the late 20th century, social scientists have developed more critical awareness of the ways in which risk is embedded in key social processes and influences social relations and interactions. This more critical approach is evident in Beck and Giddens’s analyses of the key features of late modern societies or the so-called Risk Society; it is also an important element in Douglas’s cultural theory and forms part of Foucault’s analysis of power or governmentality in modern societies. The COVID-19 pandemic is an opportunity for us to examine the ways in which policy makers use risk to make sense of and manage the uncertainties created by the new virus and to reflect on the ways in which gauging risk provides insights into the development of contemporary societies.