Feeling lonely?
You aren’t the only one! But you may be surprised to learn about the very significant impact of social isolation and loneliness in people with Congestive Failure.
In the last few months of 2020, we can certainly reflect back on how this year’s events have contributed to feelings of social isolation and loneliness throughout many different groups of people. To some degree, we have all had to change our daily routines. Whether it’s avoiding seeing and touching the people and places we love, rescheduling trips, being newly unemployed, or having to fully quarantine because of sickness or possible exposure… the lack of contact with other humans and inability to participate in the social aspects of our lives is taking its toll.
To learn more about how physical touch affects our well-being, read this insightful article!
Even before we experienced a global pandemic, and were forced to continuously adjust to the “new normal”, people were perceiving feelings of social isolation for all kinds of reasons. Some may appear more obvious, such as stressful life changes or the passing of a loved one, a long-standing history of depression or other mental health issues.
But what about all the people that appear “okay”? The ones that aren’t “officially” depressed?
Interactions with certain populations of people with other various medical diagnoses, may not automatically lend themselves to the thought… “I can’t imagine the loneliness they must feel.” People receiving care from a medical professional, whether as an inpatient or outpatient, are constantly surrounded by people… but what we don’t think of is that these interactions are often stressful, not comforting. They’re not meaningful in the same way a visit with family and friends is. These people cannot return to their usual routine and often have to implement many big changes at a moment’s notice.
One of the populations that we wouldn’t think of first as being affected by social isolation is people with Congestive Heart Failure.
How badly are people with Heart Failure affected by social isolation?
This correlation may be largely unnoticed in the heart failure population, with other pressing care issues requiring attention, especially in the acute stage. Congestive heart failure is a major reason for hospitalization and rehospitalization, and the social isolation/loneliness continues to grow.
Recent statistics from the Centers for Disease Control show approximately 6.2 million adults in the United States have heart failure. And in 2018, heart failure was listed on over 370,000 death certificates. This is quite a large group of people! Knowing that social isolation negatively impacts quality of life and mortality gives us an advantage in addressing these issues.
So how does loneliness affect health for those with heart failure?
One study, published in 2018 by the Journal of the American Heart Association, highlights how the health of patients with heart failure can be negatively impacted by how they perceive their own social isolation. (Read the full article here.)
In this study, participants were screened to assess their perception of loneliness and social isolation. They were ranked at low, moderate, or high perception of these subjective feelings and then they were compared in terms of risk for hospitalization, Emergency Department visits, outpatient visits, and risk of death.
When comparing the moderate group to the low group, the moderate group had a 16% increased risk for outpatient visits, but were not at more risk for Emergency Department visits, hospitalizations, or death compared to the group with low perception of social isolation. However, the group with a high perception of social isolation was found to be at a 26% increased risk for outpatient visits, 57% increased risk for visits to the emergency department, 68% increased risk for hospitalization, and greater than 3.5 times increased risk of death.
Those are powerful numbers!
The good news is, if we can identify these patients early on and continuously monitor them throughout the time that we provide care, we will be able to decrease their risk for needing medical care and their risk for death through providing outlets and resources to improve how they perceive their connection to the rest of the world.
What tools are available to help identify the risk for people with HF?
The Patient-Reported Outcomes Measurement Information System (PROMIS®) Social Isolation Short Form was used in the study mentioned here. This is a simple questionnaire that can be incorporated into any assessment. It has a few different versions – the full form being 14 items with ‘sometimes, always, never’ sentences such as…
| Never | Rarely | Sometimes | Usually | Always | |
| I feel isolated even when I am not alone… | 1 | 2 | 3 | 4 | 5 |
| I feel that people avoid talking to me… | 1 | 2 | 3 | 4 | 5 |
It has a few different short-form versions that easily act as screening tools when caring for someone with heart failure. Click here to download these tools and start using them today!
The UCLA Loneliness Scale is also available. This scale was developed by a psychologist and has 20 questions answered on a 4-point rating scale (never, rarely, sometimes, always). The questions are very similar to the ones listed above, such as, “How often do you feel alone?” and “How often do you feel like you are “in tune” with the people around you?”
This scale has been used in research of different groups like homeless youth, teen mothers, and low income families. However, it can certainly be generalized for use with patients with heart failure if it’s a better fit in your process for screening for feelings of social isolation! There is also a 3-item version of this scale- a great adaptation for a quick screen.
There are many other options available depending on how you choose to build this into your process.
Other tools include the following:
- Lubben Social Network Scale
- Duke Social Support Index
- Steptoe Social Isolation Index
- Berkman-Syme Social Network Index
- de Jong Gierveld Loneliness Scale
- Cornwall Perceived Isolation Scale
- Campaign to End Loneliness Measurement Tool.
But no matter what you choose to use… the important part is that you identify where they are in their perception of loneliness and social isolation so you can take the right next step.
What’s the next step?
After you identify a person to be at an increased risk, it’s important to start educating them about what their perception means! Now, you don’t have to throw all the statistics at them… that would be a bit daunting :). But make sure they understand what a huge impact how they feel has on their health.
Get them engaged in their care related to heart failure, and re-engaged in the social aspects of their life! Help them to better understand the disease process they are experiencing, so they don’t feel like they are going through it alone.
With any medical condition, the amount of information given to patients at one time can be overwhelming, especially if related to a new diagnosis. There are loads of patient and caregiver friendly free downloads on the American Heart Association website that may help the information be more understandable and accessible to them.
Another great resource for patients and caregivers who are experiencing higher perceptions of social isolation is support groups. Family and friends can’t always understand what a person with heart failure is experiencing. This lack of understanding could be a main cause of the feelings of loneliness and social isolation. Being a part of a support group can be a great way to feel connected to people who truly understand the same things you are experiencing.
Support groups can come in many shapes and sizes. Traditionally, one would go to a location approximately once per month and participate in a meeting of some sort. These are still extremely meaningful to be a part of, but unfortunately are not very easy to attend these days. Luckily, there are many virtual and online options!
If someone is seeking more information and is not yet ready for too much interaction, there are online forums where they can browse information on their own, ask questions via email or instant message, and gradually get more involved as they feel comfortable.
For people who need more interaction, Facebook is an excellent way to hook up with the right communities. There are many public and private groups for any subject you could imagine! And with everyone having to stay indoors more these days, this is a great way to get connected and stay connected!
So, remember… there are many people and various populations out there that could be experiencing these feelings, and it’s not always obvious! Putting a screening tool in place to identify patients at risk is of utmost importance in order to adequately support them and help them to recover physically, mentally, and emotionally!
To learn more about the (not so obvious) aspects of heart failure, check out our short (but information packed!) webinar – Update Your Care Plan: Heart Failure.
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