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The role of the caregiver in the recovery of the sick person is invaluable. Despite this, so far there has not been a day in the calendars that would allow us to appreciate the dedication and express gratitude to these people. On February 12 this year, the National Caregiver’s Day will be celebrated for the first time, established thanks to the joint initiative of patient organizations. Its purpose is to draw attention to caregivers’ problems and needs and to thank them for their support. It is also a call for increasing educational activities and real help that can improve the quality of life and facilitate care for relatives who are ill.
What challenges do caregivers of sick people face?
Caring for a sick person is, above all, practical challenges – daily and systematic performance of specific tasks. As shown by the results of the study conducted as part of the “Medical nutrition – Your meals in the fight against disease” campaign, among the difficulties associated with caring for the patient, more than half of caregivers of patients suffering from oncological and neurological diseases indicate physical fatigue, and 46% not having time for myself. However, it is the emotional aspect that is the most difficult for them – the feeling of helplessness and frustration *.
The diagnosis of a disease, especially one that will require long-term treatment and time-consuming convalescence, is also a difficult psychological experience for the patient’s relatives. According to the aforementioned study, the vast majority of caregivers (94%) look after the patient at home. Such care usually requires almost round-the-clock commitment, which prevents caregivers from leading a social life in the same way, often forces them to give up their professional career or abandon their passions *.
The natural tendency of family or friends to focus their full attention on the patient may also contribute to the caregiver’s feeling lonely and suppressing their own feelings and needs. For this reason, caregivers are often referred to as hidden or forgotten patients.
Good care and knowledge go hand in hand
Nearly 90 percent for those who became involved in caring for a loved one were in such a situation for the first time *. Unexpected information about the disease does not give you the opportunity to prepare – neither mentally nor substantively. Most of the respondents indicated that their level of knowledge about caring for a sick person at the moment of taking it up was medium or low. And the lack of knowledge not only affects the risk of making actual mistakes, but also increases stress, a feeling of helplessness and loneliness in the problem.
Among other things, the role of education in supporting caregivers of sick people will be highlighted during the 11th Patient Organization Leaders Forum, organized on February 12 and XNUMX under the slogan “Patient dignity and the role of the caregiver”. – Sick people often lose their optimism, hope and faith in recovery. At such moments in their lives, it is the guardian who has to face the opponent, which is the disease. However, in order for him to have the strength to cope with it, he cannot be left without support. It needs social understanding, specialists ready to provide help, as well as access to education and knowledge, which not only affect the quality of care, but can also significantly facilitate it – emphasizes Fr. Dr. Arkadiusz Nowak, president of the Institute of Patient Rights and Health Education.
The strength of the bond between the caregiver and the patient
The date of establishing the National Day of the Guardian was chosen not by accident. It falls on the day after the World Day of the Sick, which is celebrated on February 11. The choice is intended to emphasize the unique relationship between the patient and their caregiver. – Patients who are diagnosed with a chronic or incurable disease experience the so-called mourning for himself healthy. Nothing in their lives will look like before, and with that comes the fear of the unknown, facing their own imaginations, which sometimes like to scare you. Interestingly, in psychology, this phenomenon also applies to caregivers who take an active part in the treatment process. This shows how much of an influence on them – their life, health, mood – the new situation has. Unfortunately, there is still a belief among them that they should deal with problems on their own and that the illness of a loved one is not a good time to look after themselves. That is why we want to draw attention to the fact that a guardian also needs a guardian – explains the psycho-oncologist Adrianna Sobol from the OnkoCafe Foundation – Together Better.
The National Day of the Caregiver was established thanks to the involvement of eight patient organizations, inspired by the social campaign of Nutricia Medyczna “Letter to the Caregiver”. The organizations include: the Institute of Patient Rights and Health Education, the Polish Coalition of Oncological Patients Foundation, the Mazovian Association of People with Parkinson’s Disease, the “OnkoCafe – Together Better” Foundation, the EuropaColon Poland Foundation, the Federation of Amazon Associations, the Alivia Oncology Foundation and the Association “Apetyt na Życie” “.
The educational campaign “Medical nutrition – Your meals in the fight against disease”, initiated in 2016 by Nutricia Medyczna, aims to build awareness of medical nutrition as an integral part of health care. The first edition was devoted to oncological patients, and the second additionally to people experiencing neurological diseases. In the second half of 2018, the campaign was extended to activities related to nutrition through special access to the gastrointestinal tract (directly to the stomach or intestine), taking into account various disease entities in which it is used.
The campaign is supported by many scientific societies and patient organizations.
* Study “Caregivers of neurologically and oncologically ill people” carried out by SW Research at the request of Nutricia Medyczna on 23.02-05.03.2018; representative sample in terms of age, gender, city size, CAWI online survey. N = 303. Study results published: https://nutriciamedyczna.pl/biuro-prasowe/jak-po-diagnozie-zmienia-sie-cawodnosc-najblizszych-pacjenta