Loneliness, fear, uncertainty. We have all experienced these emotions in this pandemic year. But cancer patients more, because those who have a tumor always have to deal with a sense of insecurity. So what was the psychological weight of Covid-19 and the measures put in place to mitigate the spread of the virus on those suffering from cancer, and what impact on those who take care of them?
To answer these questions, the psycho-oncologists of the Ant Onlus Foundation, a non-profit organization that has been dealing with specialized home care for cancer patients since 1978, conducted a study during the peak of the Covid emergency last spring.
The survey was based on multiple-answer interviews on 114 patients with an average age of 61 and 69 family members (between 14 and 55 years) distributed in Northern, Central and Southern Italy. About half of the sample was in cancer treatment, the other half had stopped active treatment. “We wanted to understand what were the desires, needs, concerns, thoughts of the sick and those who take care of them: even caregivers are subject to risk, because they experience higher levels of distress, anxiety and depression associated with the so-called caregiving burden, the psychological and physical burden of those who care for sick people ”, he says Silvia Varani, psycho-oncologist in charge of the ANT foundation’s psych-oncology unit.
The most recurring emotions: anxiety and fear
Let’s go to the results. Among the patients involved in the survey, anxiety and fear are the emotions that recur the most: in fact, 56.1% of the interviewees put them first, 19.3% speak of sadness and only 8.8% also indicated the tranquility between the emotions felt during the lockdown period. Similar results for caregivers: 57.4% indicated anxiety and fear as their primary emotions, 26.5% a sense of insecurity and 23.5% a sense of helplessness. Only 7.4% also spoke of adaptability.
Among the fears felt by patients there was that of their own infection (for 21.9%) or of the infection of a family member (16.7%), the danger of the virus and the uncertainty connected to the epidemic (14 % in both cases). The fear of patient contagion also prevails among caregivers (38.2%) and indeed overcomes the fear of their own contagion (35.3), and among caregivers the fear related to uncertainty about the duration of the emergency. “The fear of contagion was strong – Varani continues – and exacerbated fear, anxiety and depression in patients. Many of them experienced the great dilemma: going or not going to the hospital was a recurring question. But from our data, moreover in line with studies that have been published, it emerged that between the two fears, that of the disease and that of Covid, the fear of disease has won: the choice to treat yourself and to control yourself was stronger. , and rightly so, because hospitals have built Covid free paths that have worked ”.
Social network and normality
The sense of lack was one of the moods that most affected patients and family members during the March-April 2020 lockdown. But lack of what, exactly? For the sick, the lack of contact and closeness of loved ones (39.5%), the inability to go out (27%) and the lack of friends (25.4%) weighed more. “The patients we assisted have certainly felt the lack of an enlarged social network, however – comments the psycho-oncologist – they did not feel alone, and in any case they did not have to suffer deprivation, the sense of absolute loneliness of those who were hospitalized in those months”.
For the caregiver what was lacking was above all normality and everyday life (50%), physical contact (36.8), freedom (20.6), people around (20.6%). “Caregivers have suffered a lot from the change in everyday life: the family member who takes care of a sick person experiences the spaces of normality as a recharging time: work, little escapism, even a quick meeting with a friend represent great resources. The cancellation of this normality had a significant impact on their psychological state ”, adds the expert.
Personal changes
Both patients (29.8%) and caregivers (33.8%) expressed concern about the economic situation. In terms of personal changes, while patients did not detect particular variations for themselves, caregivers tend to value small things more (29.4%) and experienced an ‘inner rebirth’ (22.1%) “Exactly ”, Says Varani:“ For about one caregiver out of 5 those weeks also had an impact that we can define as positive, in fact they declared they had a sort of inner rebirth. Which in more technical terms is what is called post-traumatic growth: it is as if the pandemic had strengthened their coping strategies, that is, the process of adapting to stressful situations ”.
The psychological role of local medicine
“The results of this study can be interpreted as a confirmation of what is emerging and which is increasingly clear. First, that Covid has had and continues to have a strong impact on the lives of cancer patients and their families. Second: that local medicine, in times of pandemics and beyond, is fundamental for the life and health of people, who need information, contacts and connections with healthcare professionals to feel safe. The patients who were able to make use of the contacts with doctors, nurses and psychologists – concludes Varani – did not feel the sense of disconnection, they did not feel abandoned “.
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