You have heard it before. When it comes to health, speaking up and advocating for yourself (as a patient) or your loved one (as a caregiver) is important. Why is this classic tune on heavy rotation, so to speak? The answer is simple. Although the message is not new, evidence shows it is worth repeating. Engagement in care planning is associated with better management of chronic conditions though personalized care planning, increased documentation and fulfillment of patients’ end of life wishes through advanced care planning, and reduced stress and burnout in caregivers of people with dementia through person-centred care (1-3). But the good news does not end there! The list of benefits and incentives is growing.
Here are a few more benefits of patients and caregivers being involved in health-related discussions and decisions (4-10). Click on the links below to learn more.
Did you know that when you present information in a way that a person with dementia can understand, they are able to learn and retain it (4)? This, alongside the fact that many people with dementia are able to remain independent following diagnosis, means that they should not be left out of important conversations about their health (11). Research also shows that involving people with dementia in their own care and understanding their needs and wishes improves their health and quality of life (5;6). Falls prevention is a good example of how this translates into real world results. Evidence shows that when people with dementia and their caregivers are able to provide input on falls prevention strategies, preferences, and capabilities, falls are more likely to be avoided (7). Social isolation and depression can also be kept at bay when individuals have the opportunity to share their stories, speak up, and socialize through these health-related discussions (8).
Transitioning patients out of the hospital and into their home or another care facility is a delicate process that requires attention and consideration. If this process is not managed well, patients can suffer interruptions in care, setbacks to their health, and emotional distress (12-22). But involving caregivers in hospital-discharge planning is one strategy that can be used to make this transition more successful. In fact, research shows that when caregivers are involved, the risk of older adults being re-admitted to the hospital can decrease by 9% to 38% three months after discharge and 10% to 36% six months after discharge. Additional benefits can include reductions in the length of rehospitalizations and cost of care post-discharge (9).
Co-production refers to the process of engaging patients in the design, management, delivery, and/or evaluation of public services, such as healthcare services. Research shows that when patients are involved in co-producing hospital tools and resources,
there is the potential to enhance health care professionals and organizations’ satisfaction, usability, uptake, and retention of these tools and resources. For patients, this strategy may result in decreased wait times and more timely delivery
of medications they are taking at home, as well as a better understanding of the medications they are using. Improvements in patient knowledge, confidence, and skills are all positive side effects that may result from co-production (10).
Advocacy and action! Whether you are a patient or caregiver, do not forget that you have a vital role to play in making decisions that impact your health or the health of a loved one. Talk to your health care team about needs, wishes, values, preferences, and concerns and how you can work together to make important health-related decisions.