Some intensive care users have difficulty taking control of their health

Some intensive care users have difficulty taking control of their health
Some intensive care users have difficulty taking control of their health

To alleviate the increasing pressure on the Dutch healthcare system, increasing emphasis is being placed on the personal responsibility of people with long-term care needs for their health, care and support. However, experiences from the corona pandemic show that not everyone is able or willing to do this. For example, care appointments were canceled much more often during the pandemic for people with a chronic illness and limited health literacy than for those with sufficient health literacy. Canceling care appointments also caused people with a chronic illness or disability to make more frequent adjustments in their self-management behavior. Many people with a chronic illness also indicate that they do not want or cannot take an active role in their own care. This is evident from research by Nivel into the health literacy, self-management and self-direction of various groups of healthcare users.

The Integrated Care Agreement (IZA) emphasizes equal access to care, with special attention to vulnerable groups. The government is increasingly focusing on the principle of self-management and self-reliance. People are initially encouraged to act independently with support from their informal network, before calling on professional care providers. However, research by Nivel shows that one in four Dutch adults has insufficient or limited health skills. In addition, there is a large group of people who have long-term care needs. What are they up against? What are their experiences, ideas and wishes? How do they experience access to care now that greater demands are being placed on their own resources? With the help of the Nivel panels, we give these people a voice and thus highlight their perspective. Would you like to discuss how we can use this perspective to reduce unequal access to care? Then sign up for our Nivel-connects session Perspectives on Accessibility on May 23!

Corona pandemic shows differences in access to care depending on health literacy

Research by Nivel among people with a chronic illness, such as diabetes, cardiovascular disease or lung disease, showed that they experienced problems with access to care during the corona pandemic. There was a clear difference between people with a chronic illness with limited health literacy and with sufficient health literacy. Nearly 40% of those with limited health literacy reported experiencing canceled healthcare appointments. Among those with sufficient health literacy, this percentage was significantly lower, at only 23%. This shows that the likelihood of negative health consequences when access to care is reduced, such as during the pandemic, is greater for people with limited health literacy.

Managing health, care or support yourself is not self-evident for everyone

Not everyone manages to act independently before calling on professional caregivers. People who need long-term care or support, especially those with a moderate or severe physical disability, young adults and people with a limited educational background, generally show a lower level of self-management skills. Furthermore, self-management behavior appears to be related to access to care and the continuity of healthcare providers. During the corona pandemic, people who had their care canceled or postponed more often reported that they made adjustments in their self-management behavior than people who did not experience problems accessing their care.

Nearly 40% of people with chronic illness cannot or do not want to take an active role in their own care

People with long-term care needs place great value on maintaining control over their health and well-being. However, the extent to which they succeed in this varies greatly from person to person. About 37% of people with a chronic illness indicate that they lack the necessary knowledge, skills or motivation to actively contribute to their own health and care. This is especially true for older people, people with a lower level of education and those who have more serious physical complaints as a result of their illness. Our research among people with lung disease shows that these vulnerable groups often do not feel that they can control their treatment together with their healthcare providers. In addition, some people prefer to leave the decision-making to the healthcare provider.

Not everyone can and wants to take an active role in his or her health and illness. This can make it difficult for them to indicate to the healthcare provider what their own wishes and needs are

Juliane Menting, PhD

Senior researcher Care and Participation in Chronic Conditions

Interactive meeting about Perspectives on Accessibility
What do citizens, patients, informal caregivers or people with disabilities mean by ‘accessibility’ in healthcare and welfare? When does accessibility turn into inaccessibility for them? We conduct research into this using our Nivel panels, in which citizens and patients as well as informal caregivers and people with disabilities have a voice. What would you like to know about accessibility and what it means for them? We would be happy to discuss this with you!

On Thursday, May 23, we are organizing an interactive meeting at Nivel (in Utrecht, within walking distance of Central Station) about Perspectives on Accessibility: from citizens, patients, informal caregivers and people with disabilities.

For whom
Are you a healthcare policy officer, researcher or advocate and would you like to participate or read more about it? Which can! Go to our registration page for more information or to register immediately!

About the research

The results presented come from research with the Nivel panels. We conduct research into the experiences, wishes and ideas in the field of care and participation of various groups in society, including citizens, patients, informal caregivers and people with disabilities. For the research into the health literacy, self-management and self-direction of various groups of healthcare users, results from research with the National Panel for the Chronically Ill and the Disabled, the Nivel Healthcare Consumer Panel and the Lung Monitor were included. Third parties can also have research carried out with the Nivel panels.

The article is in Dutch

Tags: intensive care users difficulty control health


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