Studies have shown that dialysis patients do better, live longer and are more likely to follow their treatment plan when they have social
support.1,2 A recent review of 20 studies found that family members and friends who serve as “informal caregivers” to home dialysis patients can feel overwhelmed
when they have to add dialysis-related tasks to other tasks they do daily. Some tasks care partners do relate to a patient’s health but not dialysis specifically, such as: The study also found that when care partners said performing tasks helped them become more resilient and aided their personal growth, these positives helped to offset the burden.3 Two years ago, I wrote a post
for KidneyViews entitled Caring for Home Dialysis Care Partners, hoping that what I wrote would: In that post, I provided a link to MEI’s Partner Agreement on Tasks for Home Dialysis (the PATH-D for HHD or
PATH-D for PD, which can help patients and care partners decide together which tasks each is willing and able to do. I believe that if home training nurses encourage patients and care partners to fill out the PATH-D for PD or HHD, it might open a discussion of what the tasks are for each type of treatment and how to share them. However, posts from care
partner members of the Home Dialysis Central Facebook group make me think it is time for a renewed effort to identify causes of care partner stress and ways to reduce it. One example of a post describing a care partner’s stress received over 100 responses. Below is what she wrote and a few of the responses from patients and other care partners.
One man offered a comment:
A care partner commented about what helped a patient take greater responsibility:
A solo patient shared her opinion:
A post in another thread was started by a home HD patient who explained why she believes it’s best for care partners to encourage patients to do all they can. She wrote:
As you can see from these posts, how much help a patient needs and how much his/her care partner is willing to do can be plotted along a continuum. Some patients are trained and approved to do dialysis solo without a care partner. Some patients are fully able to do all dialysis tasks themselves and a care partner may be present, but only provide help if it’s needed. That care partner may need to be there because a clinic requires it. Some patients may do some tasks but are unable to do others. Others may not be able to do any self-care tasks and their care partner chose to be trained and willingly does all the dialysis tasks to allow the patient to be at home instead of having to do dialysis in a clinic. Still others may be so angry or depressed about having kidney failure and needing dialysis that they refuse to do even those tasks they could do, putting their care partner at great risk of burnout. Do you know how burdened your patients and their care partners feel? Some care partner members of the Facebook group report that dialysis staff have never asked them how they’re doing. When you ask, know the signs of stress and burnout so you can recognize them and make sure they’re addressed quickly. Unaddressed stress can affect health and relationships. Relationship problems can lead a home patient to switch to in-center dialysis. Some patient who switch feel like they failed, which can add to anxiety and depression. The AMA developed a printed Caregiver Self-Assessment Tool that allows care partners to screen themselves for stress. There’s an online version as well. Asking care partners to do this and share the results with you, can be very helpful to the care partner, the patient, and you. Signs of stress and burnout According to Psychology Today, “Stress generally refers to two things: the psychological perception of pressure, on the one hand, and the body's response to it, on the other, which involves multiple systems, from metabolism to muscles to memory.”4 It’s a part of life to have short-term stress, like when you’re waiting in line of traffic and need to be somewhere at a certain time or you have to finish a project by a deadline. But having a life-altering chronic illness or taking care of someone with that illness can cause ongoing stress, anxiety, depression and can lead to burnout. Psychology Today, defines burnout as “a state of emotional, mental, and often physical exhaustion brought on by prolonged or repeated stress.”5 According to WebMD:
Unmanaged stress causes discomfort and can be dangerous. It can affect multiple organs in the body, raise blood pressure, and increase the risk of stroke and heart attack.7 Managing Stress Dialysis staff can help encourage a patient, care partner, and the rest of a family to agree on what household chores each person can do. In addition to using the PATH-D, other ways dialysis staff can help care partners manage stress include encouraging them to: Life can be stressful. Most of us can handle short-term stress. However, chronic stress that occurs with a chronic illness can cause emotional, physical, cognitive, and behavioral symptoms and affect relationships. To help our home dialysis patients have a happy and healthy life, we need to understand and acknowledge that caring for a loved one who is on dialysis is stressful. Home training should never turn a capable patient into a passive receiver of care or turn a care partner into a care giver. Avoiding this is one way we can limit stress before it happens. We owe it to care partners and patients to help them learn ways to better manage stress. Which stress assessment tool incorporates physical intellectual emotional spiritual and social aspects of health for a balanced assessment?The Ardell Wellness Stress Test incorporates physical, mental, emotional, spiritual, and social aspects of health for a balanced assessment.
Which of the following is a cardiovascular problem that is a result of chronic stress?Stress may lead to high blood pressure, which can pose a risk for heart attack and stroke. Stress also may contribute to such cardiovascular disease risks as smoking, overeating and lack of physical activity.
Which type of breathing is an indicator of chronic activation of the stress response?Diaphragmatic breathing happens due to chronic activation of the stress response.
Which dimension of health relates to your ability to think and learn?Cognitive health — the ability to clearly think, learn, and remember — is an important component of performing everyday activities. Cognitive health is just one aspect of overall brain health.
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