Consequences on Family Informal Caregiving during COVID-19 Pandemic: Comparison
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Please note this is a comparison between Version 2 by Jessie Wu and Version 1 by Antonella Serafini.

The COVID-19 pandemic has deeply affected the quality of people’s social life, strongly impacting family dynamics, too, not only in the harshest periods of the pandemic but also afterwards. Pandemic-related measures led to a ‘stay-at-home’ approach that increased the mental and physical burdens of family caregivers, irrespective of whether they were living together with the person they were caring for or not. 

  • COVID-19
  • caregiving
  • home

1. Introduction

Over the past decades, family organization has radically altered. Technological and societal changes led to new models of cohabitation and living, with more focus on individuals and less on families. At the same time, new achievements of medicine led to an increase in the number of people to be taken care of, both the elderly and those affected by chronic diseases. The caregiver, i.e., the one who takes care, is a family member who free of charge, and by virtue of the emotional bond that binds him/her to the cared person, takes care of and assists in the daily life of a sick or/and disabled relative who is not self-sufficient on a part-time or full-time basis.
Taking care of a family member is a multifaceted issue that involves the well-being of the family caregiver, support from other family members, budget issues and good quality private and public services. Finally, although the sacrifice of the individual for the well-being of the beloved is highly valued, the burden on the caregiver is often overlooked in society. Non-remunerated caregivers have always been the backbone of long-term home caregiving in chronic diseases. In summary, caring for a family member requires the caregiver to have an ability to adapt which is far more challenging than in previous decades when the social structures were more secure, and the pandemic has added to this distress. The last available reports before the COVID-19 pandemic show that roughly 9% (approx. 5 million) of the adults in the United Kingdom and almost 16% (approx. 40 million) of the adults in USA benefited from unpaid care [1,2][1][2]. In Europe (data from 2018), the amount of people over 18 years of age providing informal care at least once a week ranged prior to the pandemic from 10% in Romania to 30% in Greece [3]. Caregivers have become more and more involved in providing care, leading to define a few items as compulsory for their well-being: recognition of their role, financial support, health and well-being, information, work, and formation [4]. Social and family dynamics have been deeply affected and even shattered by the COVID-19 pandemic. The sudden emergence of the pandemic has added a huge strain for patients and families as physiological aging and need of care required a balancing between biological risk and care. The COVID-19 pandemic turned out to be a worldwide tragedy like other dreadful events affecting the human species, either self-inflicted such as world wars and genocides or inflicted by nature such as earthquakes, tsunami, and pandemics. However, because of the sudden spread of the pandemic and of today’s interconnected world, the consequences have been far more impactful on our lives. This is even more true for developed countries that have been safe from wars and genocides since the second world war.
The impact of the pandemic on the social and family structures has been multifaceted because of the widespread diffusion of the virus and the real-time worldwide news. A huge number of people died, and the survivors of the disease are still affected physically, mentally and in their relationships, and many of them have yet to fully recover because of long COVID. Before large-scale vaccinations became available for medical care, economies and social life were deeply affected. Medicine, nowadays heading toward a personalized approach, had the main objective of protecting the community and not the individual during the pandemic [5]. Huge limitations to social interaction and mobility were set in place, also affecting economies, and leading to a shrinkage in the Gross National Product of most countries.
Relational dynamics of individuals and families have been deeply affected as well. Those family members who had the role of caregivers were forced to face a dilemma: was it possible to maintain the same level of caregiving while avoiding transmitting the virus and putting their own life and the life of the cared person in danger? To tackle this new communication, tools were used, leading to a different dynamic in the relations between people and their family caregivers, where caregiving in person was prevented. The need for increased support for caregivers was not met as the pandemic led to the reduction or even closure of support services for them, increasing their isolation, feelings of abandonment and stress [6]. Economic issues often became relevant, and the overall burden worsened caregiver quality of life and eventually led a number of them toward depression. In particular, as the age of the cared one increases, the weight and responsibilities of a family caregiver of an elderly person will consequently increase. The health, well-being and daily life of closely related people who take on a great deal of responsibility can be significantly impacted.

2. COVID-19 and Family Caregiving

Family caregivers are a fundamental pillar of every National Health Service. Family caregivers are “family members, friends and neighbors who look after others who need help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support” [6]. Nowadays, family caregivers provide from 70 to 90% of the care required by children or by adults that are not hosted in dedicated residences and are affected by chronic conditions or frailty [7]. Despite the social relevance of caregivers, an increasing number of caregivers find it more and more difficult to carry out their tasks, as providing care affects the caregiver’s health and well-being (depression, anxiety, restrictions to social life), and addressing such issues has not been among the priorities of health systems [7]. Nevertheless, a strong call for governments to improve support for family caregivers from all points of view (financial, practical, emotional) has been issued [8,9][8][9]. The pandemic has in fact heavily affected caregivers as their physical and mental resources were drained and their social and personal lives weakened because of an increase in distress and isolation.
The world has faced the pandemic in an adaptative way. In Europe’s ‘stay-at-home’ policies, physical distancing and travel restrictions were implemented [10]. Such policies, aimed at reducing the spread of the virus, have heavily impacted social relationships and family dynamics. The first national lockdowns led to an increased burden and subsequent distress for family caregivers [9]. The stay-at-home policy led family caregivers to reduce face-to-face interactions, whilst the need for social distancing led to the closure of day centers and respite facilities leaving family caregivers on their own. In addition to pre-pandemic caregiving, many people were forced to become an almost overnight caregiver for their beloved with no training. In a framework of social disruption, the anguish related to the pandemic was amplified by the fear of inadequacy and of transmitting the virus to their beloved. Technology was used to overcome at least partially the social distancing and keep in contact with loved ones. However, while smartphone use and acceptance were widespread, the negative correlation of computer use with age restricted its impact [11]. Travel restrictions and ‘stay-at-home’ policies made migrant care workers unable to carry on their domiciliary care work, heavily impacting their incomes [12].
Such issues are not limited to a few countries, but are worldwide ones as the COVID-19 pandemic had a disrupting worldwide impact. WReseachers quote here a number of papers (one per country) to witness how widespread the feeling is that there is a need to counter the impact that the pandemic had on the mental status of the caregivers. Reports came from the Americas (Bolivia [13], Brazil [14], Canada [15], Chile [16], Latin America [17], USA [18]), Africa (Kenya [19], Nigeria [20]), Asia (China [21], Hong Kong [22], India [23], Japan [24], Malaysia [25], Palestine [26], Taiwan [27]), and Europe (Finland [28], Germany [29], Greece [30], Italy [31], Netherland [32], Poland [33], Serbia [34], Spain [35], Turkey [36], UK [37]). Although caregiving for many different pathologies was investigated (diabetes [14], stroke [21], nephritis [23], cancer [29[29][31][32],31,32], SLA [35]), the main focus in the literature has been on caregivers providing care to children with mental disorders [13,15,19,26,27,34,36][13][15][19][26][27][34][36] and old people with pathologies such as dementia [16,18,20,22,28,30,33][16][18][20][22][28][30][33].
Despite these growing issues, the focus of the media and governments during the pandemic was on the spread of the virus, the increasing casualties and on the urgent need to develop new drugs and vaccines. Only marginal attention was devoted to the impact of the pandemic on families and on caregivers, even though they were more and more prone to many problems: anxiety, sleep disturbances, weight gain, distress/stress due to caregiving, increase in alcohol drinking, and struggle to access social support. Family caregivers have been affected not only by governmental policies that have limited their caring activities as described above but also by the fear and anxiety of being infected by the virus or transmitting it to their beloved. In the United Kingdom, social isolation increased, and routine activities have been disrupted, leading to tough challenges for caregivers. In total, 72% of them stated that their mental health worsened because of the lack of a break from caregiving and 78% reported high levels of fatigue and exhaustion [4]. About one-third of caregivers felt unable to handle their caregiving role, and only 14% had faith that the external support available before the pandemic would be provided in the future [4]. A study focused on caregivers reported how necessary it was to provide timely information and advice on the handling of the funerals during the pandemic [38].
Several issues are responsible for the increased stress on caregivers due to the pandemic: reduced support network, social isolation, increased daily challenges, lack of information, and concerns for their own health and well-being [39]. However, it has been recently pointed out that the impact of COVID-19 pandemic on family caregivers has been largely overlooked [4]. Issues such as the limited or even non-existent access to health services, hospitals and medical clinics forced people to become overnight caregivers and provide home care to people affected by COVID-19. In most cases, the caregivers were close family members [40]. Although non-professional caregivers were widespread in society, the impact of the COVID-19 pandemic on their experiences and health have attracted little interest [41]. Very little information is available about the impact of the pandemic on caregivers, and therefore, the most effective measures to support them are yet to be defined.
The levels of stress and the burden due to providing care for family members and caregivers have increased considerably, and it has often been necessary to resort to therapeutic adaptations such as the use and abuse of benzodiazepines to manage anxiety, which is not always in agreement and synergy with the doctors. Among the causes of such a situation are the changes in daily routines of life, the impossibility of resorting to strategies to control behavioral manifestations of stress by appropriate actions (e.g., going out for a walk), and the prolonged isolation imposed by the pandemic. It has been highlighted, however, that family caregivers have been more heavily negatively affected by the pandemic than non-caregivers. They were in fact more likely to take extra precautions to avoid becoming sick or infecting their beloved. They were also more likely than non-caregivers to experience social isolation, anxiety and depression, fatigue, sleep disturbances and financial hardship. Family and friends who provide regular care for a sick or dependent individual (“caregivers”) are at increased risk of health-related socioeconomic vulnerabilities (HRSVs). The pandemic increased risk of incident and worsening in HRSVs among women caregivers compared with non-caregivers [42]. According to caregivers, the pandemic has increased their responsibilities and made caring more difficult emotionally, physically, and financially. This was largely due to the disruption in access to care for both them and their beloved, and the resulting lifestyle adjustments have led to the reported increases in worry, fear, depression, and anxiety [43].

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