What we learnt by providing assistance to Huntington families during the Coronavirus’ emergency
From March 9 to April 30 – about 2 months - we were forced to go through, like everyone else, a completely new and unexpected situation, which we faced using all our flexibility and our spirit of adaptation . What appeared clear to us since the very beginning was that we would have never, ever stopped providing care to patients.
So, we immediately set up online visits and contacts. Our experience with this different way of interacting has been incredibly positive: it allowed us to set foot in the houses on tiptoe, giving us the opportunity to interact with patients, children and family members - who probably would have not come to the clinic because intimidated by the idea of 'going to a visit'. It allowed us to talk to each other without having to wear a mask and to break down the barriers of a distance which, we would like to reiterate, has been for us, merely physical.
We are now keen to share what we have recorded in these two months in terms of needs, difficulties, but also opportunities, and what we have learned, from our daily contacts with 280 virtually-assisted people and thanks to the 157 respondents to the our online survey.
In general, we registered less discomfort in patients than in family members, which we noticed decreasing as the disease progressed.
In the early stages of the disease, patients were more worried about stopping rehabilitation or trials, about giving up their job with the concern of not being able to go back to work in the future due to the disease’s progression. In patients in early and intermediate stages of HD, the abrupt and sudden interruption of their routine that included frequenting squares and bars, which represented an important social and recreational aspect, has sometimes worsened or brought out anxiety and behaviour disorders.
On the other hand, in patients with impaired autonomy, such as bedridden people, this situation has not changed their daily life negatively. In some ways, we noticed that it has been perceived as favourable, because the patients were happy to share more time with their family members, usually less present at home for working reasons.
As far as caregivers are concerned, we have experienced considerable discomfort in them, with the possibility also in this case to distinguish different situations: caregivers who assist family members in intermediate stages of the disease, have been more affected by some critical issues of this period compared to caregivers of people in early and advanced stages. One of the main factors is related to work: in some situations the caregiver was the only person within the family unit to receive a salary, maintaining the partner and / or the parent and children; currently many people have lost their job, with significant financial damage that worries and makes the relationships at home very tense. Another critical factor is related to the interruption of the domestic care of various figures such as health workers, who are indispensable in sharing the care load and giving relief of the main caregiver who, supported in this way, was more relaxed and could take a brief rest in the assistance of the family member.
Families with children affected by HD were deeply affected by the restrictions related to the health emergency. These people already constitute the most fragile portion of those affected by HD and in this period they have been particularly touched by the events and drastic changes in their daily habits. The children were greatly affected by the restrictions, which they can’t fully understand, such as being unable to have close contact with friends or other family members, who they were used to see daily and now suddenly seem very distant. Another disorienting change concerns the ban on resorting habits necessary to regulate their emotional states, such as a car ride or a walk in the park.
Contrary to what one might think, we have not noticed significant differences in the perceived discomfort between the Italian 20 regions. We can hypothesize that a lower care of the pandemic conditions in some regions has been counterbalanced by a prompt and functional management in those most affected (for example in some schools’ Regions have made available to students laptops with which to follow online lessons).
The value of time
All of us had more time, but being able to transform this time into something productive has not been taken for granted at all. Someone, however, managed to turn this time into an occasion, a possibility.
There were many people who managed to make a dream come true and they finally found the time or maybe just the motivation to achieve what they want or maybe even just to find some extra time to dedicate to selfcare and to their relationships.
We have noticed differences between patients and caregivers: the latter, in general, seem to have experienced greater discomforts than patients.
We have recorded differences in the main causes and 'intensity scales' of the discomfort related to the stage of the disease: the discomfort was felt less in situations where the disease is more advanced.
We did not notice significant differences related to the Regions in which the HD families live.
We have experienced serious difficulties in children affected by Paediatric HD and their families.
We have seen many people rediscover the value of small daily gestures and of the closeness to their beloved.
Last, but not least, we had the confirmation that telemedicine - although it cannot in any way replace the warmth of physical contact - represents the future of health assistance.