In 2016, the Ministry of Healthcare (MoH) of Ukraine adopted the regulation which directly allowed 24/7 access in intensive care units (ICUs). According to the survey only 20% of respondents were able to visit their family members in reanimation 24/7 in 2019. This regulation wasn’t cancelled during COVID-19 epidemic, but in reality most hospitals in Ukraine isolate all patients in all reanimation units. This June, a 4 year old boy died alone in ICU with leucosis diagnosis – the doctors didn’t let his mother to visit him because of quarantine regime.

Until 2016 only several Ukrainian hospitals allowed visitors in ICUs to be with their loved ones. In most hospitals, ICUs were closed for visitors. Children got psychological traumas because they did not see their parents in the hardest moments of their lives. Some children and adults died alone.

Access to ICUs was prohibited violating the Fundamentals of Ukrainian Health Legislation and the UN Convention on the Rights of the Child.

Since 2016 civil activists led the country-wide ‘Open reanimations campaign focused at enabling family members to visit patients in reanimation’. This campaign made the Ministry of Healthcare (MoH) to adopt the regulation which directly allowed 24/7 access in June, 2016. However, implementation of this order is still a big issue. There were signals that hospitals sabotage the MoH’s order, but no strong evidence was available. Lack of actual information limited the ability of activists and MoH in further actions. The research was conducted to study the experience of ICU patients and their families and to define possible measures for its improvement by NGO “Horizontal connections” (whose team launched the campaign) and Info Sapiens’ with the support of experts from other fields. All work is done pro bono.

Online survey was conducted among 498 patients of ICUs and their relatives who were at ICUs within June, 2016 – March, 2019 (after adoption the regulation which allowed 24/7 access). The links to online questionnaire were disseminated by Ministry of Health of Ukraine and other organizations. The survey covered citizens of Kiev and all oblasts of Ukraine. 62% of respondents were at adult ICUs and 38% – at pediatric ones.

Efficient use of resources in the health system is a worldwide challenge. In Ukraine, it is a particularly difficult task due to: a) the lack of reforms in the healthcare for 30 years after the Soviet Union collapse, b) the lack of solid economic growth to finance the transformation of the system, c) turbulent political life, d) war, etc.

The research provided a unique assessment (no other data on that topic is available) of the actual level of implementation of the MOH’s order three years after its adoption – only 20% of respondents were able to visit their family members in reanimation 24/7.

The survey showed that efforts are needed both on supply and demand side – only 53% of respondents are aware of the regulation which allows 24/7 access. It uncovered the main problems of personnel-patient interaction – it is the personnel’s attitude that people suffer from the most; not bribes, not doctor’s (un)professionalism, not even the health-related worries.

The survey provided evidence against some popular myths, which allows refocusing the efforts of stakeholders on the truly important issues. Involved NGOs are already reshaping their activities to focus on the main problems (as revealed by the survey). In particular, the research brought up the need to:

1. Continue strengthening the public demand for the openness of ICUs.

2. Support patients/family members by providing information about ICUs.

3. Change the mindset of the healthcare workers, managers and officials by providing them with information, trainings, and support on the way of ICUs opening.

4. Elaborate guidelines for healthcare management how to improve facilities and gain resources at hospitals for rooming-in (panel screens, chairs for parents, antiseptics, etc.).

This research helps to fight for the right to get a medical aid without systematic attacks on one’s dignity and severe struggle for the information or human contact.

The results of the study were shared with the Deputy MOH, over 60 chief doctors, oblast health management divisions, members of parliament and patients’ organizations. MOH and the minister personally put them on their website and Facebook page.

National Health Service considers integrating results into the education programs for health professionals and updating their standards.

Our partner NGOs developed guidelines for ICU visitors for online and offline distribution. The MOH helped distribute them to the hospitals.